Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

UK Situation in General

The material on the 'British situation' has undue weight in terms of it's presence on this page that does nothing to improve understanding of the illness, while the symptoms section is little more than a list and very hard to read. This should be moved into the Controversies page. Leaving it here creates a fork lacking balance and lacks a Neutral point of view WP:NPOV.

It also needs to be much more 'Journalistically sound' by properly drawing together the full impact of those targeted and the limited extent of that activity.

New edits

I generally agree that most of the newer edits by Doc James improved the article but I have disagreements with some. I wanted to discuss them to see if there is consensus.

• I don't believe serious symptoms in the first sentence of the lead is as accurate as debilitating symptoms. A majority of the recent reviews and guidelines seem to use the wording "debilitating symptoms" to describe the illness.

• I disagree with separating the Oxford criteria from the other criteria as they are all used for clinical and research purposes. I believe they should be recombined and possibly the title renamed to better describe the section.

There are some other wording changes that may improve the article here and there. Now that the sections are rearranged and simplified it has exposed other weaknesses in the article. But these seem to be minor and in time copy editing should fix these. Good job Doc James. Thanks. Ward20 (talk) 15:31, 7 May 2015 (UTC)

Agree that overall this is an improvement - although it would have been good if DocJ could have at least outlined his strategy on this page given the scale of changes. I agree with Ward that 'debilitating symtoms' is a far more useful term. As regards the split of the Oxford reference - I think that is wholly logical and I would keep DocJ's edit; Oxford was developed specifically for Research and as far as I'm aware has never been expressly employed in a clinical setting. I haven't been able to go through all the changes,although something did stand out as problematic (not sure if new or old) is:

• Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness for many people in multiple randomized controlled trials. Many seems far too ambiguous, certainly PACE only showed notable benefit for a minority.

I also agree with Ward that the new presentation shows up deficiences in the article. Some sections look somewhat bloated relative to the information given the reader, and it might be worth looking at reductions where daughter articles exist.--In Vitro Infidelium (talk) 17:24, 7 May 2015 (UTC)

Sure so I had two goals

1) to order this article to match the outline used for other conditions per WP:MEDMOS

2) to simplify the language to make the lead more accessible specifically Doc James (talk · contribs · email) 20:38, 7 May 2015 (UTC)

How about rather than "CFS is a medical condition characterized by significant symptoms, including fatigue, that lasts for a minimum of six months in adults (and 3 months in children or adolescents)."

"CFS is a medical condition characterized by symptoms, including fatigue, that lasts for a minimum of six months in adults (and 3 months in children or adolescents). These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities.[1]"

rather than use the complicated word "debilitating" we can simply write what it technically means "limited ability to carry out ordinary daily activities"

By the way the new MedlinePlus content is in the public domain and therefore we can use it verbatim. They have partly dumped ADAM. Doc James (talk · contribs · email) 20:43, 7 May 2015 (UTC)

I suggest "CFS is a "devastating and complex" medical condition characterized by fatigue and other symptoms that substantially limits a person's ability to carry out ordinary daily activities. The illness must last for a minimum of six months in adults (and 3 months in children or adolescents) in order to receive a diagnosis.[2]" Ward20 (talk) 10:32, 8 May 2015 (UTC)

That is more complicated IMO. Also does not have a very encyclopedic tone. Doc James (talk · contribs · email) 17:06, 8 May 2015 (UTC)

I think the term "devastating" is too subjective, and the disease varies from one person to the next anyway. While certainly life-altering for me, I think "devastating" would be a bit strong of a term, while others who are permanently bed-bound most certainly are devastated by the disease. I have no objections to the term "complex", though—after all, if it were simple, we'd know exactly what it is by now—and I like the idea of including wording that specifically references the change to ordinary daily activities, since even milder cases of it usually have a notable impact in that area. – Robin Hood  ^(talk) 19:24, 8 May 2015 (UTC)

OK, here is a mash up for consideration: "CFS is a complex medical condition, characterized by fatigue and other symptoms, that lasts for a minimum of six months in adults (and 3 months in children or adolescents). These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities.[3]"

Ward20 (talk) 07:03, 9 May 2015 (UTC)

Could we simplify it a little further to "CFS is a complex medical condition, characterized by fatigue and other symptoms, that lasts many months. These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities."

We can than describe the exact number of months in areas as the exact number of months IMO is not the most important. Doc James (talk · contribs · email) 16:04, 9 May 2015 (UTC)

I'd suggest changing the wording to "long-term fatigue and other symptoms", if we're going to simplify it to that extent. As worded there, it sounds like the disease comes for a few months and then goes away again, which obviously isn't the general case. – Robin Hood  ^(talk) 17:42, 9 May 2015 (UTC)

Yes, using the wording, "long-term fatigue and other symptoms" I would eliminate "that lasts many months" as that term would then be redundant and possibly ambiguous as to the illness duration. Ward20 (talk) 18:01, 9 May 2015 (UTC)

Sounds good. Doc James (talk · contribs · email) 18:12, 9 May 2015 (UTC)

• The problem with that suggestion above is that 'Myalgic Encephalomyelitis' now redirects here. That is not long term 'chronic' fatigue. It is exhaustion that comes and goes -dependent on the amount of activity, both mental and physical. We have both 780.71 & G93.3 locked into one article. It would be better to separate them again. One code, one unique article article. Otherwise, it continues to go against, all we have been taught about about correct nomenclature & taxonomy. That established form is the correct way (as an encyclopaedia) to organize things. --Aspro (talk) 13:33, 10 May 2015 (UTC)

This suggestion has been brought up many times in the past. The problem is that there's no broad agreement that ME and CFS are two separate things. Before we can entertain separating the two, there would have to be significant support for the idea in the medical literature from government health agencies, in the various journals, that sort of thing. The ICD itself doesn't make the clear distinction, and the two codes you're referring to are in different versions of it, so we can't say that they're two different entries for two different diseases. Also, contrary to your assertion, for many of us, there is chronic fatigue (and other chronic symptoms, of course) which gets a lot worse when we exercise. The new SEID criteria, for example, even suggests that "The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity." It's been a while since I've read them, but as I recall, the CCC and ICC allow for both intermittent and chronic illness, and make no distinction between them. – Robin Hood  ^(talk) 15:32, 10 May 2015 (UTC)

Is it any wonder that “This suggestion has been brought up many times in the past.”? This redirect (ME to CFS) was done some years back, when a number of psychiatrist (who have become known as the Wesley School) gained some traction in convincing people that ME was psychological in origin. Yet there was never any logical reason offered, to lump CFS (associated with cancer etc.,) with and other codex designations. Prof. Wesley has now excused himself from this and so we should re-split the articles. It will make the wording easier. Trying to blend a conclusion from two different premisses, was discovered by the Greek philosophers to be impossible. Now that, that Prof (that original promoted this), has backed-out himself, from wanting to lump all these sign and symptoms together -then what is the point of WP still lumping everything together? This problem didn’t exist before the redirect. The redirect only serves to confuse. So why not go back to where we were before? To say this problem has cropped many time since the redirect is maintaining a circular argument. --Aspro (talk) 16:05, 10 May 2015 (UTC)

"characterized by long term fatigue and other symptoms" does not mean that "long term fatigue" must always be present. It is just a common symptom. Both are two such a degree that functioning is affected. So the text we have is correct for both terms and thus I see no reason to separate. We can discuss the finer details in the body of the article. The lead is for generalities. Doc James (talk · contribs · email) 16:19, 10 May 2015 (UTC)

Many a malady has over-lapping signs & symptoms. Are you suggesting, that using your logic, I can do a blitz on WP and redirect multiple article with over lapping symptoms? As to “We can discuss the finer details in the body of the article.” Chronic_fatigue_syndrome#Comorbidity just takes up 4 sentences! I see where you coming from, yet the problem (in part) lays with the word 'Syndrome'. CFS is not a pacific disease. Denying finer taxonomies their own article is taking a step backwards and sitting on it. The article CFS would make more 'rational' sense if included See also to the other codexes and definitions. If we were only to stop bitching amongst ourselves, an epidemiologists (or two or three) may be willing to contribute. But professionals steer clear of articles where they find, that as anybody can contribute to WP, their own contributions get deleted as fringe because other editors were only exposed to the superficial, simplistic explanation in med skool. I agree with Doc James that we should discuss this in finer detail – yet, for that to be productive, we need to have those discussions in the right article talk pages. Otherwise we might as well say to all the WP editors they can forget nomenclature & taxonomy, and just edit in a way that makes them feel warm inside. The reason that “This suggestion has been brought up many times in the past” is because some people 'care' and are willing to question past dogma and bring their learning up-to date. Split the article back again and then see if anyone can come up with a justifiable reason to bring about a consensus to redirect. --Aspro (talk) 20:11, 10 May 2015 (UTC)

Actually, I never said anything about the previous redirect, I said that the suggestion had been brought up in the past. I'm aware that there was redirect some time ago, and I'm aware that, both currently and in the past, there have been people editing the wiki that have both pro-physiological and pro-psychological viewpoints. I believe, in fact, that most of us currently monitoring the article believe in a physiological basis for the disease (i.e., we're not of the Wessely school). None of that has anything to do with what the medical literature says, however. If you want to suggest a split, you need to find reliable medical literature that says they're two clear and distinct diseases. It's really that simple. The ICC states that those with ME should be excluded from CFS, which is an excellent starting point, but one diagnostic criteria out of some twenty or more is not sufficient to justify the split. So, what other significant medical literature or bodies suggest that ME and CFS are separate? If you can find a couple of things like that that comply with Wikipedia's requirements, the split can happen anytime. In the absence of such evidence, however, Wikipedia's own rules say that the split can't happen. – Robin Hood  ^(talk) 06:13, 11 May 2015 (UTC)

Aspro, you brought up the same topic here in February and the same arguments are being rehashed. Right now there seems to be more reliable sources equating cfs and me than separating them. If you can prove otherwise than great, produce the sources.

There is a chance this topic will heat up in the medical literature in October of this year when ICD-10-CM is implemented, and USA doctors will have to choose between diagnosing one or the other because the two diagnosis codes are mutually exclusive. Note it lumps and Chronic fatigue, unspecified and Chronic fatigue syndrome NOS together which is bound to cause issues:

"G93.3Postviral fatigue syndrome

Benign myalgic encephalomyelitis

Excludes1:chronic fatigue syndrome NOS (R53.82)"

"R53.82Chronic fatigue, unspecified

Chronic fatigue syndrome NOS"

I would advise either presenting reliable sources to back up your suggestion now, or waiting until After October to see if more reliable sources back your suggestion then. Ward20 (talk) 09:12, 11 May 2015 (UTC)

Thanks to Doc James for explanation of strategy which makes full sense of the changes. @Aspro - we've been through this at length previously. Let's be absolutely clear - there never has been a WP article based on ICD-9-CM that was separate from an article based on ICD-10 or any previous ICD iteration. There were, some years ago seperate CFS and ME articles but both referenced ICD-10 and ICD-9-CM, and neither article would now meet current WP standards. Without any MEDRS to base a split on this is a dead issue unless perhaps, as Ward20 suggests something arises from conflicts within the operation of ICD-10-CM. Given that ICD-11 is in preparation, that it will be a more complex iteration than ICD-10, and that there is a potential for SEID to enter classification in both ICD-11 as well as in ICD-10-CM annual updates, setting out to create separate CFS and ME articles at this point would seem foolish given the level of effort involved, and that major re-evaluation may be required on a continuing basis over the next one to two years. --In Vitro Infidelium (talk) 17:28, 12 May 2015 (UTC)

Aspro is right, ME/PVFS/Iceland disease/Akureyri disease should not redirect to the CFS article. WHO ICD G93.3 should have its own article. The former mentioned disease names/descriptions/ICD entries existed long before CFS did and it makes no sense to subsume them under what is clearly an ICD-9-CM CFS based article. It leads to ridiculous confusion, like the box on the top of the page listing classification. It lists the ICD-9-CM code for CFS but then the WHO ICD-10 code for PVFS. As mentioned above, this should be changed soon to reflect the upcoming ICD-10-CM classifications (to be clear, it should say ICD-9-CM 780.71 and ICD-10-CM R53.82), and clearly I think the fact that the ICD-10-CM lists them as separate, exclusionary diagnoses supports the creation of a separate PVFS/ME article. Don't hold your breath for ICD-11, it's a long ways off and ICD-10-CM will likely be in use for a long time to come. Anal0gue (talk) 19:19, 17 June 2015 (UTC)

Again, where is the evidence? I know it's the in thing in the ME/CFS activist community to try to separate ME and CFS, but there's really no broad agreement on whether they're one disease, two, or a hundred. The fact that the ICD and International Consensus Criteria suggest a split is certainly a step in that direction, but we're not at the point yet where we can justify a split based on Wikipedia's guidelines. In order to do that, there needs to be broad agreement that ME and CFS are clearly separate things, and there needs to be supporting evidence. Otherwise, we end up creating a POV fork, and simply duplicating most of what's here on both pages. When there's solid evidence that they're two separate conditions, that's when we split them on Wikipedia. – Robin Hood  ^(talk) 21:46, 17 June 2015 (UTC)

It's also the "in thing" in research to try and separate them because it's an important question that needs to be answered. Leonard A. Jason has been doing work in this area and reports that ME criteria select out a different patient group than CFS criteria. That's pretty compelling evidence for a difference. Without a biomarker we'll never be able to definitely say they're different. It's also a bit of a double standard. While I don't have any solid evidence that they are different to support a split, you don't have any solid evidence that they are the same to maintain a single article. With the way this article is now, it's too narrow of a POV, only focusing on US Fukuda CFS. I imagine it would rustle everyone's jimmies if people started adding ME specific information in this article and it would be rolled back, much like if someone tried to populate the ME article with ME specific information. In this way, all information about ME is unfairly suppressed. It has nothing to do with activism. Anal0gue (talk) 19:53, 19 June 2015 (UTC)

Yes, you're right, it is a very important question, and I firmly believe that different conditions will be split off in the future as evidence becomes available. Various pilot studies that I've seen over the years I've had this have suggested that what currently gets grouped under the term "CFS" may be as many as seven or eight different conditions, while others suggest that it's just one, with a very broad array of symptoms. Anyone looking at forums will see some fairly substantial variations between patients, which is why I personally believe it's more than just one thing, but I can't prove that, and so far, neither has anyone else. Even those who are proponents of separating ME have yet to prove that the encephalomyelitis occurs in all cases of CCC/ICC-defined ME. Last I heard, there were only one or two very preliminary studies that suggested that that was the case, not anything resembling proof. As for selection criteria, that's a no-brainer, though certainly Leonard's work is going a long way to formalizing the results. The simple fact is that if the criteria always selected the same groups, the debates over what criteria to use wouldn't be happening and a lot more progress would've been made on this/these condition(s) by now.

As for a double-standard, it's not at all. Most of the literature currently still treats them as a single entity. Can they prove it? No, of course they can't, because we don't have any kind of known etiology at this point. But since the literature mostly treats ME/CFS as a single thing, so must we. If the majority of the literature starts treating them as clearly separate things, or better yet, clear proof comes out that they're separate things, then Wikipedia will absolutely follow suit and I'll be the first to propose/support such a split. Given that they're mostly being treated as a single thing right now, by all means, go ahead and add whatever ME-specific stuff you can find. Just be aware of the restrictions set out by WP:MEDRS, which require that studies by reliable, secondary sources, for the most part.

Finally, as for Fukuda-defined ME/CFS, I'm curious where you see that. If the scope of the article is in any way too narrow, then by all means, we should expand it to ensure that we're presenting a clear, accurate picture of things. Unfortunately, most of the times people have brought forward that suggestion, it's based on whatever preliminary research or unproven assertions (even if those assertions are by experts in the field) are currently popular in the forums and/or the activist community. Wikipedia doesn't work that way, one of its major precepts being verifiability, not truth. – Robin Hood  ^(talk) 20:34, 19 June 2015 (UTC)

Also, can you point me to which Wikipedia guideline would be against a split of the two? As far as I can tell, this is a pretty unique scenario, there don't seem to be many diseases with more than one (or in the case of ME, 7+ names). I actually spent almost an hour going through the ICD-10-CM and WHO ICD-10 looking for another example disease so I could see how it was handled on WP but couldn't find one. It's also a little weird to me that SEID redirects to the CFS article. It's going to have its own, likely separate ICD code. It has it's own history and diagnostic criteria. The whole point of the creation of SEID was to move away from the inaccurate, stigmatic CFS name. And here we are redirecting SEID to CFS. Anal0gue (talk) 00:29, 20 June 2015 (UTC)

(edit conflict) Let me come at this from another angle: let's say a split happens. Without question, on both the ME and CFS pages, we would want to define how the two are different from one another. Provide the text for that distinction, with reliable references from sites such as PubMed. (Sorry, looks like we just cross-posted, I'll respond to the above message in a sec.) – Robin Hood  ^(talk) 00:33, 20 June 2015 (UTC)

Why does it have to be a medical literature based distinction, can't it be a historical distinction? Wikipedia is an encyclopedia, not a medical text book. There is a history and information about ME that existed for decades before CFS was even invented. Shouldn't that information exist in an encyclopedia, underneath the appropriate heading? Anal0gue (talk) 00:54, 20 June 2015 (UTC)

Here is the text for the distinction, right out of the ME ICC paper, indexed on Pubmed:

″The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).″

Yes, a lot of the literature uses the terms interchangeably, but that doesn't make it right. Strictly speaking, if a paper uses one of the CDC criteria, it should say CFS. If it uses the CCC, it should say ME/CFS. If it uses the ICC, it should say ME. If it uses the IOM criteria, it should say SEID. Anal0gue (talk) 01:12, 20 June 2015 (UTC)

(←) I pointed you to the relevant guideline above: POV fork. You're certainly correct that this is a fairly unusual situation. The only similar situations I can think of went in the opposite direction, merging two diagnoses into one. The first is sociopathy vs. psychopathy. Currently, those are the same article because the popular belief in psychology is that they are. Twenty or so years ago, they would likely have been two separate articles. Another one is the debate about high-functioning autism vs. Asperger syndrome. Amusingly, despite the DSM-5 doing away with the diagnosis of Asperger's, we still have two separate articles. I haven't looked, but I wouldn't be surprised if those pages have had a lot of similar split/merge debates because I believe they're both still considered contentious issues.

As far as SEID goes, that's definitely going to be another one to keep our eyes on. At the moment, it redirects here because even though the different diagnostic criteria come up with different results, they're all trying to evaluate the grouping known broadly as CFS, of which ME and/or SEID may or may not be a part. If the term SEID becomes accepted and widely used, and even more so if it defines a clear disease process that can be distinguished from other things currently grouped under the CFS umbrella, then I think we could entertain renaming or splitting the article. Right now, though, SEID is only a proposed name from an American institution and the criteria for it still need to be evaluated for how effective they are at identifying patients.

Responding to your next post, we do have some of the historical definitions under the History section, plus of course that links to an entire article about the history. If we ever do split this article, some of that would definitely go into the new one and quite possibly end up being removed from here, depending what is seen as being included/excluded in CFS at that point.

And for your most recent post, I'll let others comment, as I'm less neutral on that issue than someone else might be (amusingly, I'm both for and against a split, simultaneously, which is a very confusing position to have). Even with the ICC bit that you quoted, though, that would support a renaming, but not necessarily a split. – Robin Hood  ^(talk) 01:19, 20 June 2015 (UTC)

Another reason not to split at this time is the 2015 study Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Some definitions may not be describing different illnesses, but may instead be selecting different phases of the same illness. In any event the material that is now being discussed can be used in the article Clinical descriptions of chronic fatigue syndrome with secondary sources showing how the people described vary with the definitions used. That article is in need of an overhaul anyway. Then if secondary sources start to split off subgroups per various definitions, new articles could be developed from there.Ward20 (talk) 08:02, 20 June 2015 (UTC)

The Lipkin/Hornig study is not a very compelling argument for ME and CFS being the same thing. The inclusion criteria for patients in that study was Fukuda *and* CCC, plus they had to have developed the disease following a viral illness. The last part is key and probably heavily selected out the real ME (aka post-viral fatigue syndrome) patients. There is a new paper out by Twisk that concludes that ME and CFS criteria define two overlapping but distinct clinical entities. He states plainly that ME is not equivalent to CFS. Anal0gue (talk) 01:13, 24 June 2015 (UTC)

That's still one person's opinion. Until it becomes broadly accepted, Wikipedia cannot take the stance that the two diseases are distinct. As Ward says, we don't fully understand yet whether we're looking at one disease or many. Any splitting of the article needs to wait until the science is more certain. – Robin Hood  ^(talk) 14:57, 24 June 2015 (UTC)

Anal0gue please read WP:MEDRS. It really is pointless reference trading when the references simply don't meet WP's basic requirements. For a major change to the article structure such as splitting into two new (and largely mirror) articles, we would need some very strong WP:MEDRS recognised material - at least two separate publications would likely be required to underwrite a sustainable split. It may be frustraing but WP is rules based (mostly) and innovations tend to stand only when the rules (in this case WP:MEDRS) are fulfilled. --In Vitro Infidelium (talk) 16:08, 24 June 2015 (UTC)

I understand the requirements, but please show me two separate secondary sources that confirm ME and CFS are the same thing supporting a merged article. This article is full of primary source references. If it wasn't, the entire article would probably be about 3 paragraphs long. There are very few secondary sources for this disease because there is so little known and so little research. The most recent secondary source, the AHRQ report, should barely get away with using ME in the title. Yes they included research using the CCC ME/CFS criteria, but they also purposefully cut off the literature search at 1988 because this is when the first CFS definition came about. They ignored decades of ME only research on purpose for reasons I can't begin to understand.

I don't believe the articles would mirror each other if they were split which is why I advocated for splitting them in the first place. The ME article could be based on secondary sources from 1934 to 1988 covering ME, and any other sources after that based on research using Ramsay/London, CCC, and ICC criteria. The CFS article could remain based on any secondary sources using Reeves/empirical/Fukuda criteria. Anal0gue (talk) 22:24, 24 June 2015 (UTC)

@Anal0gue: The NICE guideline, for instance, lumps CFS and ME together. Many others do too. There is loads of research but a lot of it is of dubious quality and just confuses matters. As for "ignoring ME research", that's a question you need to ask the authors of the criteria.

I think you're going to find it difficult to find consensus for your proposal to fork the ME article. It's been discussed before and things remain the way they are currently. JFW | T@lk 22:54, 24 June 2015 (UTC)

Yes, the NICE guidelines refer to CFS/ME, but as far as I know there's no evidence reviewed there that prove ME and CFS are the same or different. Anyone can write "ME/CFS" when they're writing up a research paper, but that's different than actually doing a study where you compare patient groups diagnosed with the different criteria and proving they are the same or different. As I mentioned above, there is some work in this area with some preliminary findings showing they are different but it needs way more study.

I see there is little support for splitting the articles but I remain unconvinced that it would be against WP policy if done correctly. Has it ever been proposed to rename the article to myalgic encephalomyelitis and redirect CFS to it instead? The ME name has been around far longer and is also less US-centric. As shown above, the ICC (a secondary source) recommends use of the term ME over CFS and was penned by the worldwide experts in the disease. Additionally this 2007 review by Hooper recommends the same. Anal0gue (talk) 04:52, 25 June 2015 (UTC)

It would be against policy if there's a consensus not to fork and then you fork anyway. The arguments for splitting have been debated in extenso before.

Old names for diseases are often abandoned or subsumed (e.g. the name "consumption" for "tuberculosis" or "Wegener's disease" for "granulomatosis with polyangiitis"). The ICC criteria are extremely inclusive and Hooper's review is rather controversial. The new IOM report, probably one of the most authoritative voices one will ever hear on the subject, explicitly includes ME.

Incidentally, have you come to Wikipedia only to have a discussion on this subject, or are you planning to make some other contributions? JFW | T@lk 07:36, 25 June 2015 (UTC)

I'm not talking about other diseases, I'm talking about ME, and as I pointed out the world experts on the disease reached a consensus in 2011 and recommended calling the disease ME. That's pretty far from abandonment. Yes, I came wanting to make contributions on ME because there seemed to be a dearth of information about it on WP, and now I see why. Anal0gue (talk) 08:13, 25 June 2015 (UTC)

There is a dearth of the kind of information that you would like to see. As it happens, the content on Wikipedia develops by consensus, and that's why it looks the way it looks. Over the years there has been lively discussion on this talk page, with representatives from all schools of thought in this area.

Short of forking the content about ME, what improvements to the article do you propose? JFW | T@lk 12:18, 25 June 2015 (UTC)

JWF, could you perhaps explain why you think it would be a fork? At first glance, I see nothing in this article that would reappear in an article on ME. Cheers, The Jolly Bard (talk) 22:06, 26 June 2015 (UTC)

The names "chronic fatigue syndrome" and "myalgic encephalomyelitis" have, at least for the last 20 years or so, generally been used synonymously. There's still no consensus in the broader medical community as to whether they're one disease or several. Splitting the article at this point would only lead to a huge overlap in content because of that issue, and the parts that don't overlap would be based on an emerging belief that lacks solid scientific evidence. There's certainly very suggestive evidence, but I don't think it's strong enough at this point that anyone can say with certainty what it is that differentiates them. Some have suggested that post-exertional malaise is a distinguishing factor, and personally, I believe that may be true, but I can't ignore the possibility that it could be like hyperactivity in ADHD...there are a group of ADHD patients where there is clearly little or no hyperactivity. – Robin Hood  ^(talk) 22:39, 26 June 2015 (UTC)

Like I said, I don't see the overlap that you suggest. ME has a different definition from CFS altogether, so there is no need or incentive to find evidence that they are different. I would not copy anything from this CFS article. The Jolly Bard (talk) 23:11, 26 June 2015 (UTC)

No Decision About ME

The MEA has published the results of its 2012 patient survey No Decision About ME Although this is clearly not a MEDRS source it does represent an important patient perspective. I don't know what the current WP position is on patient perspective within disease articles, so I'm just offering this for comment, I also have to acknowledge a small personal CoI in that as one of the MEA's 4,000 members I've supported the publication of the report. --In Vitro Infidelium (talk) 13:36, 29 May 2015 (UTC)

Link not working. Doc James (talk · contribs · email) 03:21, 1 June 2015 (UTC)

Link now here I believe. Ward20 (talk) 07:23, 1 June 2015 (UTC)

Patient Organisations - Proposal to Add AfME and MEA

The external links section/CFS Template - Organizations: lists Solve ME/CFS which is a US organisation but no other. WP has articles on two UK patient organisations Action for ME and the ME Association, AfME is comparable in financial scope to Solve ME/CFS and the MEA although smaller in financial scope has a comparable membership to AfME, MEA is also the oldest ME patient organisation, being closely linked to both Dr Ramsay, and Prof Betty Dowsett. Both organisations would seem to pass any notability test and both have informative websites ME Associationand Action for ME Currently the template appears on both the MEA and AfME article pages but lists only SolveME which is somewhat anomalous. If there are no objections I will add MEA and AfME to the template next weekend, unless of course someone else feels it's OK to go ahead and make the additions before then. --In Vitro Infidelium (talk) 16:01, 31 May 2015 (UTC)

Sounds good to me. I agree that both of them are very notable and that it makes sense to add them. – Robin Hood  ^(talk) 02:05, 1 June 2015 (UTC)

Done !--In Vitro Infidelium (talk) 09:15, 7 June 2015 (UTC)

P2P ME/CFS: Advancing Research final publishing

Annals of Internal Medicine http://annals.org/article.aspx?articleid=2322801 and http://annals.org/article.aspx?articleid=2322804#Abstract --In Vitro Infidelium (talk) 10:05, 16 June 2015 (UTC)

Also http://annals.org/article.aspx?articleid=2322800 --In Vitro Infidelium (talk) 13:21, 16 June 2015 (UTC)

And a useful summary which might assist editors gleaning useful elements from the above: http://annals.org/article.aspx?articleid=2322808 --In Vitro Infidelium (talk) 13:25, 16 June 2015 (UTC)

Here are the full citations:

Komaroff AL.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness.

http://annals.org/article.aspx?articleID=2322808

Ann Intern Med. 16 June 2015;162:871-872. doi:10.7326/M15-0647

Haney E, Smith MB, McDonagh M, et al.

Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop.

http://annals.org/article.aspx?articleID=2322800

Ann Intern Med. 2015;162:834-840. doi:10.7326/M15-0443

Smith MB, Haney E, McDonagh M, et al.

Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop.

http://annals.org/article.aspx?articleID=2322801

Ann Intern Med. 2015;162:841-850. doi:10.7326/M15-0114

Green CR, Cowan P, Elk R, et al.

National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

http://annals.org/article.aspx?articleID=2322804

Ann Intern Med. 2015;162:860-865. doi:10.7326/M15-0338

Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.

http://www.iom.edu/Reports/2015/ME-CFS.aspx

Washington, DC: National Academies Press, 2015.

--Nbauman (talk) 05:53, 20 June 2015 (UTC)