Talk:Alternative names for chronic fatigue syndrome/Archive 1

Archive 1

March 2008

Move Nomenclature from Chronic fatigue syndrome to ME/CFS nomenclatures per talk. Ward20 (talk) 01:31, 16 March 2008 (UTC)

Article clean up discussion from Chronic fatigue syndrome for ref

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)

Moved Ward20 (talk) 01:31, 16 March 2008 (UTC)

Yuppie flu

The article erroneously states that the term "yuppie flu" originates from 1990. In reality it is at least several years older. For example, my Finnish CFS/ME website features a letter sent by one of our members in response to a Finnish news article about "yuppie flu", dated March 1988. It would be great if someone could dig up a more accurate source for its origins. DiamonDie (talk) 13:10, 24 April 2008 (UTC)

Totally disputed

Since User:Sciencewatcher keeps adding intentionally false information, I have no choice but to tag the article as totally disputed. Note that it is not allowed to remove such a template until the issue is resolved. Guido den Broeder (talk, visit) 01:12, 11 September 2008 (UTC)

Please discuss this rationally. What is the problem? --Sciencewatcher (talk) 17:44, 11 September 2008 (UTC)

Totally disputed (2)

Now that WLU has removed ME from the title, most of the content has become incorrect. Many of the listed terms are alternative names for ME, but not for CFS. Note: a good number of alternative names for ME have already been removed by WLU, but others still remain. Guido den Broeder (talk, visit) 07:43, 11 September 2008 (UTC)

Dude, discuss at Wikipedia talk:Manual of Style (medicine-related articles)#ME.2FCFS therapies move, don't forum shop to every single page. Those that I removed were unsourced. Per WP:PROVEIT, if you want the names replaced, find sources. WLU (t) (c) ^{(rules - simple rules)} 13:48, 11 September 2008 (UTC)

Based on Colin's comment, this probably would be a better venue for discussing the names. So I'll post messages to centralize here for the naming conventions. Below is as good a place as any. WLU (t) (c) ^{(rules - simple rules)} 17:55, 11 September 2008 (UTC)

WHO classification

The ICD10 classifies Neurasthenia (F48.0) thus [1]:

Excludes:

• asthenia NOS ( R53 )
• burn-out ( Z73.0 )
• malaise and fatigue ( R53 )
• postviral fatigue syndrome ( G93.3 )
• psychasthenia ( F48.8 )

ME is listed under postviral fatigue syndrome, i.e. neurasthenia explicitly excludes ME, as well as all other terms that have the code G93.3. Some of the confusion stems from the fact that neuromyasthenia used to be an alternative term for ME. Almost the same word, but biological rather than psychosomatic. Guido den Broeder (talk, visit) 14:27, 11 September 2008 (UTC)

And many researchers think that ME and neurasthenia are the same thing, although this is better discussed on the talk page. And I'm happy to add individual refs for each illness in the psychosomatic article if that is what the consensus is. Again let's discuss it on the page for the article itself, not here. As I said in the talk page, the reason I removed the pov tag was because it was inappropriate in that case. --Sciencewatcher (talk) 17:19, 11 September 2008 (UTC)

(cut & pasted above from WP:ANI.) I think that since the ICD10 doesn't ever mention the term "chronic fatigue syndrome", the whole claim ought to be removed. Mangojuice^talk 17:45, 11 September 2008 (UTC)

Google scholar turns up 30K for CFS, 2K for myalgic encephalomyelitis, 145 individual hits for myalgic encephalopathy (assuming no typos or spelling mistakes). 3 million, 220K and 17K for straight-up google. Pubmed doesn't aggregate search results in a linkable fashion, but I get 3705 for CFS, 225 for myalgic encephalomyelitis, 8 for myalgic encephalopahty. Amazon.co.uk gives 48, 46 and 0, .ca gives 48, 15 and 0, and .com isn't really reliable 'cause they sell stuff. CFS comes out pretty clearly ahead in all measures, including the UK (google UK - 3 million, 60K and 8K) where you would expect the numbers to be reversed. There's no deadline and it's not a book, so if the world health community comes to a decision that CFS is to go the way of the dodo, we'll document and change. Until then, I've yet to see any evidence based on the most reliable sources to distinguish, change or adjust away from what it currently is. Haven't we already had this discussion? What do people think of the new lead on CFS, with it's its greater prominence given to the name issue? WLU (t) (c) ^{(rules - simple rules)} 18:10, 11 September 2008 (UTC)

You will probably find even more hits for cancer. That doesn't mean that cancer and CFS are the same, or that CFS should be replaced with cancer, although they have several symptoms in common. There are more CFS hits than ME hits simply because there is more CFS research than ME research. Guido den Broeder (talk, visit) 19:09, 11 September 2008 (UTC)

That's a pretty dumb argument. I have never heard of any researcher saying that CFS and cancer are the same illness, but the mainstream opinion is that CFS and ME are the same. --Sciencewatcher (talk) 19:55, 11 September 2008 (UTC)

Are WHO and CDC not part of the mainstream? Back up your statement with sources. Guido den Broeder (talk, visit) 20:00, 11 September 2008 (UTC)

Yes, they certainly are mainstream. If you look at this page on the CDC's website they say in their glossary "myalgic encephalomyelitis - A synonym for chronic fatigue syndrome in common usage in the United Kingdom and Canada." The WHO doesn't seem to have any opinion. --Sciencewatcher (talk) 20:12, 11 September 2008 (UTC)

So some assistant made a glossary. That is not a statement. This one is: 'Despite an intensive, nearly 20-year search, the cause of CFS remains unknown.' [2] I.e., according to the CDC, no equivalent diagnosis existed before CFS. Guido den Broeder (talk, visit) 20:27, 11 September 2008 (UTC)

The WHO have been asked about their opinion on this matter on various occasions, a.o. by the RIVM on my behalf. I have a letter that says the WHO considers them different entities. Also, the WHO have announced that CFS will not have altogether the same code as ME in the ICD11. Guido den Broeder (talk, visit) 20:27, 11 September 2008 (UTC)

Wikipedia is not bound by the WHO's classification, which has been criticised for creating a dichotomy here. Wikipedia operates by consensus, and some fairly strong arguments have been presented that CFS is the main name for the condition. That doesn't mean that we cannot discuss ME, its history, the possibility that it might be an independent condition (as asserted by a small group of vocal researchers such as Byron Hyde) etc etc. But I think the above arguments support the conclusion that the page titles should not accord ME the same prominence as CFS, because that is simply not borne out empirically. JFW | T@lk 23:17, 11 September 2008 (UTC)

I'm still waiting for a source to support such a statement. Think what you may about the WHO, but it is an, if not the, authority on these matters. Guido den Broeder (talk, visit) 23:29, 11 September 2008 (UTC)

Still waiting for which source? When did you ask for it? And with regards to the WHO: it is indeed an authority, but that doesn't mean that in cases such as these we should accept its classification as the guiding principle for Wikipedia articles. JFW | T@lk 23:36, 11 September 2008 (UTC)

Actually it does, unless you have sources with more weight that say different. Guido den Broeder (talk, visit) 23:40, 11 September 2008 (UTC)

I'm no longer sure what we're debating here. ME and CFS are the same thing, or different? There's arguments for both, and both statements should be present. The real discussion should be is it portrayed as "ME and CFS are considered by most to be the same thing but some disagree" or "ME and CFS are considered by most to be different but some disagree". From my reading, most consider it the same condition. [3] [4], [5], [6], [7], [8]. I only find one reference GDB provided here - who is Westcare? And if the North American Journal of Psychology is the best we've got, well, it doesn't seem to show up on pubmed. What's the impact factor of NAJP?

Guido, can you stop trying to be clever and simply answer the question. Or even pose it, I'm not sure what we're discussing anymore. WLU (t) (c) ^{(rules - simple rules)} 23:53, 11 September 2008 (UTC)

Does anyone else read this as a reason to stop the discussion, hide the section and get on with our lives? If we're not going to have a reason to change the name for five years, that gives me five years to rack up another 100K or so worth of edits before I have to pay attention to this again. WLU (t) (c) ^{(rules - simple rules)} 00:02, 12 September 2008 (UTC)

I'm not sure what the current question is, but I'll try to explain better.

1. Patients are ill, you can say that they have some condition, illness or disorder.
2. ME and CFS are different diagnoses, different types of diagnosis even, attached to the same condition. They are labels, not the condition itself.
3. The old diagnosis ME is a disease diagnosis. Its definition does not change over time. It either describes the condition correctly or it doesn't. For some time since the early 1990's, it was believed by many of the large, new generation of researchers (those that learned of the condition from the CFS definition) that it didn't describe it adequately. With new biomedical results coming in since 2004, this is being reconsidered.
4. The new diagnosis CFS is a syndrome diagnosis, specifically a working diagnosis for research only. It was never intended to replace ME. We change its definition each time that we consider this helpful for the selection of patients. There is no CFS definition before Holmes. Nobody used a working diagnosis before then. Therefore, we cannot attach the term to anything that happened before its first application. CFS simply did not exist.
5. Because so far no definition for CFS listed all essential aspects of the condition, many people have been diagnosed with CFS that do not qualify for the diagnosis of ME. These people probably suffer from a different condition. Realising this, several groups of experts discussed how to deal with the situation, and came up with a number of suggestions.
6. Since the beginning of 2007, the international association of ME/CFS clinicians and researchers are advocating the use of the combination CFS/ME or ME/CFS for the time being, and so are most patient organizations.
7. For the near future, we are waiting for the results from CFS subgroup studies to come in. There are preparations by the CDC to redefine CFS again, this time based on a functional score. At the same time, it has been announced by the WHO that CFS will appear in two places in the ICD11: one coinciding with ME (postviral), the other to capture the remainder (non-specific CFS).

Hope this helps. Regards, Guido den Broeder (talk, visit) 00:54, 12 September 2008 (UTC)

WP:OR, WP:SYNTH, no WP:MEDRS. No reason to change the page. WLU (t) (c) ^{(rules - simple rules)} 01:06, 12 September 2008 (UTC)

Like I said before. This is Wikipedia, bias rules. Guido den Broeder (talk, visit) 01:20, 12 September 2008 (UTC)

Yep, there is indeed bias against your viewpoints, because everyone perceives them to be a minority perspective. How do you explain the fact that the term "chronic fatigue syndrome" is used in all those publications since 2004 that you suggest support a biological etiology (did anyone else say otherwise?)

How does the CDC classify ME? As a synonym for CFS. JFW | T@lk 05:28, 12 September 2008 (UTC)

The same way as I did yesterday: if they called it CFS research, that is because they did CFS research. If they did cancer research, they called it cancer research. The CDC does not classify diseases. I have not given you my personal perspective, thanks; that is significantly different. I just gave some facts. You can find them all in sources already provided. Please remain civil. Guido den Broeder (talk, visit) 07:14, 12 September 2008 (UTC)

Some people above have quoted a "glossary" from the CDC stating that ME has been used as a synonym for CFS, as if that's the final word from the CDC on the issue on classification. About 3 months ago at the CFS talkpage, Bricker presented the following statement(s) from the CDC, which imply that doing so is inaccurate: "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." [9] - Tekaphor (TALK) 08:14, 12 September 2008 (UTC)

Thanks Tekaphor, I was looking for that. Maybe we should keep all the demystifying stuff on a separate page, since it so quickly gets snowed under. Guido den Broeder (talk, visit) 08:27, 12 September 2008 (UTC)

Undent. Guido, until they produce research that shows ME and CFS are different, they will be the same regardless of your beliefs to the contrary. I'm convinced by a CDC page, I'm unconvinced by your protestations. Tekaphor, the problem with the term ME is it's quite generic (painful muscles with CNS swelling, not that CFS is much better) and can be used to describe any condition producing painful muscles with CNS swelling, or the condition now known as CFS - that's how I read the CDC course document. The delicate issue in all pages with contested subjects is how to best portray the scholarly majority opinion to avoid undue weight; selecting single sources that represent a particular point, particularly when that single source isn't particularly weighty (it's a course overview, not a textbook, journal article or official statement) isn't the best approach. It's not an easy thing to do, and it should be negotiated, but always in keeping with wikipedia's policies and guidelines. That's the only real touchstone we have. WLU (t) (c) ^{(rules - simple rules)} 11:34, 12 September 2008 (UTC)

So why do you ignore the page Tekaphor just gave?

No, ME is not so generic at all. If you do not have CNS inflammation, you do not have ME.

The research showing that ME and CFS are different will not be coming because they are different by definition (the definition of CFS changes over time, so it is already logically not possible that these are all the same as the definition of ME which is fixed).

What we have, however, is research that patients diagnosed with ME (or ME/CFS) differ in illness from patients diagnosed with CFS (Fukuda) but not ME, by a.o. DeMeirleir and Jason. Such research is rare, because almost nobody funds fundamental research, but it does exist.

I have yet to see a single reference to support your position. If you don't produce any, I suggest that we rename the articles again (note: but not to undo all you did, you also made some good improvements). Guido den Broeder (talk, visit) 12:51, 12 September 2008 (UTC)

I like Tekaphor's source. Do we have any sources that actually claim ME and CFS are the same? The CDC glossary source mentioned above, I think, doesn't do much to balance this source from Tekaphor, because it cannot be expected to have the same level of reliability. And while there are surely many examples of use of the term ME vs. CFS, we ought to set a higher standard -- a mere example may be an example of misuse as much as it may be an example of use. We should expect a source that explicitly addresses both terms and talks about them being the same. Mangojuice^talk 13:53, 12 September 2008 (UTC)

Mango - the glossary that JFW cited is also from the CDC. The link cited by Tekaphor is to an on-line continuing education course. Both are produced and hosted by the CDC. Guido - did you see these links: [10] [11], [12], [13], [14], [15]? All use ME/CFS interchangeably, just as the CDC link suggests. The course states that "Various terms are incorrectly used interchangeably with CFS." but provides no reference for this statement. The CDC website has several contradictory statements about it - the definition says they're the same. They cite NICE, which says they are the same, but they also say that A number of illnesses have been described that have a similar spectrum of symptoms to CFS. These include fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis. Although these illnesses may present with a primary symptom other than fatigue, chronic fatigue is commonly associated with all of them. It goes on to say "In addition, there are a large number of clinically defined, frequently treatable illnesses that can result in fatigue. Diagnosis of any of these conditions would exclude a definition of CFS unless the condition has been treated sufficiently and no longer explains the fatigue and other symptoms. These include hypothyroidism, sleep apnea and narcolepsy, major depressive disorders, chronic mononucleosis, bipolar affective disorders, schizophrenia, eating disorders, cancer, autoimmune disease, hormonal disorders*, subacute infections, obesity, alcohol or substance abuse, and reactions to prescribed medications. " ME isn't there. CDC is quite equivocal by my reading. E-medicine lists ME as a synonym or related term. Picking the one source that agrees with a position and writing it as the minority isn't a good idea. WLU (t) (c) ^{(rules - simple rules)} 14:39, 12 September 2008 (UTC)

NICE, and anything derived thereof, is not a reliable source. It is the subject of a court case. Your other references do not support your position but instead reject it. These publications use the compound ME/CFS, as we did before you came along. Guido den Broeder (talk, visit) 14:54, 12 September 2008 (UTC)

Guido, I think WLU doesn't have a set position on this. WLU - I understood that both sources were from the CDC. I still say that Tekaphor's source is more reliable. Both are from the CDC, so they are published respectably. However, the glossary entry doesn't go into any depth, and says that the term ME is in "common usage," not that they are appropriately regarded as the same. On the other hand, Tekaphor's source is in-depth and focused on CFS, and addresses the point explicitly. I agree we should not be cherry-picking sources, but we have to look at what the sources say about the issue in question. I think it is reasonably established that there is a good reason to think that the interchangeable use of ME and CFS may be a mistake. So I don't think that examples of reliable entities such as NICE choosing to use the terms interchangeably makes any argument against that. What *would* be a counter-argument would be sources on the other side explicitly discussing the terminology / definition question and coming to the opposite conclusion. The CDC glossary might be on the other side but it doesn't go into enough detail to say. Right now I envision text in the article that says that the terms CFS and ME are often used interchangeably, although some sources criticize this as inaccurate. (Tekaphor's source actually backs up both points there, and the CDC glossary source further backs up the first point.) Mangojuice^talk 17:29, 12 September 2008 (UTC)

Trying to represent the scholarly majority opinion sounds rather difficult for a controversial illness where consensus might not be easy to determine. I have heard many times that the indexing of a paper at PubMed doesn't necessarily mean it's good. One potential problem with relying on simply the number of papers is that it gives equal weight to each paper, and possibly just the abstract since that's all the PubMed search seems to index, so even if the authors discuss "ME" in the full-text but not the abstract, it doesn't get counted. I think it's obvious that many researchers and organisations routinely use CFS and ME interchangeably, but they often use them together (ME/CFS or CFS/ME), so the issue is why only one should be used over another at Wikipedia, instead of both. As for the technical complications of having a slash in ME/CFS, this could be avoided by using a dash instead, ie ME-CFS, but obviously an acronym form would be preferred over full spelling of ME&CFS. - Tekaphor (TALK) 14:27, 13 September 2008 (UTC)

Another thought: researchers who published papers that only mention "CFS" may not actually state their opinion on the CFS vs ME issue, they are simply using research criteria as outlined by the CDC, so they are studying "CFS". The CDC gave us "CFS" and most researchers use it instead of "ME", but according to the CDC, it was not meant to be exactly the same thing. - Tekaphor (TALK) 17:00, 13 September 2008 (UTC)

I mostly agree with you Tekaphor. I'd just like to add that the CDC (or anyone else) doesn't really know exactly what CFS or ME actually are, so it is impossible to get a definitive answer. I think that is why there is a difference between what they say on their website and in one of their studies. All we can say is that most researchers and organisations use the terms to mean the same illness, and CFS is generally the preferred term these days. --Sciencewatcher (talk) 19:03, 13 September 2008 (UTC)

Cleanup

As a beginning, I have changed the lead to more adequately describe the actual situation and controversies. If this stands, the template is no longer needed. Guido den Broeder (talk, visit) 13:29, 12 September 2008 (UTC)

WLU, please explain why you reverted my edit that was intended to resolve the main issue with this article. Try to work with the regular contributors, not against them. Guido den Broeder (talk, visit) 15:11, 12 September 2008 (UTC)

I agree with WLU, that wording wasn't ideal. I still don't understand why we should emphasize the WHO's viewpoint so much when it says almost nothing directly about the issue. Mangojuice^talk 17:30, 12 September 2008 (UTC)

The WHO is in charge of the classification of diseases. What it does, is gather consensus information. It has collaborating institutes in many countries all over the world. So if the WHO lists ME and CFS as distinct diagnoses, this carries considerable weight. Guido den Broeder (talk, visit) 17:54, 12 September 2008 (UTC)

Lots of organizations do that. The WHO is one of them. It's also the one organization that seems to support your point unequivocally. I don't know if it's undue weight to place so much interpretation on one document when the general scholarly literature doesn't seem to agree. WLU (t) (c) ^{(rules - simple rules)} 18:52, 12 September 2008 (UTC)

No, there is just the WHO. Most countries in the world have signed the WHO treaty, which means that they are bound by WHO decisions. The other major authorities in this field are the CDC, with an international task regarding outbreaks, and the IACFS/ME, the international association of ME/CFS researchers and clinicians. All three of them disagree with your point of view. The same goes for the scholarly literature, I have given you the references, and I am still waiting for you to provide even a single reference that supports you. Guido den Broeder (talk, visit) 18:58, 12 September 2008 (UTC)

Okay I see your point now. The WHO never refers to "chronic fatigue syndrome" anywhere. The only term for CFS discussed in this article that appears in the ICD-10 is "benign myalgic encephalomyelitis." I now support your version. I also understand better what Sciencewatcher was trying to say earlier: that "neurasthenia" is also listed in the ICD-10. But what's missing for that edit is sourcing that describes neurasthenia as the same disease as CFS. Regarding balance, I think that given the importance of the ICD-10, some real weight on that is reasonable. The ICD-10, though, was last updated in 1992 so its up-to-dateness may be a bit less than desirable. However I do note that "Chronic fatigue syndrome" is explicitly listed under G93.3 in the ICD-10-ca (Canadian expansion of the ICD-10). Mangojuice^talk 19:12, 12 September 2008 (UTC)

Thanks, Mangojuice. Note that while the ICD10 was published in 1992, there have been several new editions, the last one I believe quite recent (2006?). Nothing was changed with regard to the classification of the diagnoses discussed here though. Guido den Broeder (talk, visit) 19:20, 12 September 2008 (UTC)

Neurasthenia has its own page, adding to the complications - it's not CFS or ME I believe, but ME and CFS are treated synonymously by many groups. The WHO does not seem to govern researchers, who use CFS interchangeably with ME - again I point to these pubmed citations which slashes the terms [16] [17], [18], [19], [20], [21] WLU (t) (c) ^{(rules - simple rules)} 19:45, 12 September 2008 (UTC)

Again: no, they don't. They use the compound ME/CFS, as advocated since January 2007 by the IACFS/ME. Guido den Broeder (talk, visit) 19:55, 12 September 2008 (UTC)

(unindent) Meanwhile, I gather that consensus has been reached to drop neurasthenia. Guido den Broeder (talk, visit) 19:58, 12 September 2008 (UTC)

No. The symptoms for neurasthenia are the same as for CFS, and some researchers believe they are the same. See e.g. PMID 15047091 "chronic fatigue syndrome (CFS) and its predecessor neurasthenia" and PMID 2181519. --Sciencewatcher (talk) 20:00, 12 September 2008 (UTC)

The references do not seem to say that at all. Besides, consensus does not require that every single editor agrees. Guido den Broeder (talk, visit) 20:17, 12 September 2008 (UTC)

Yes, it appears that a consensus means that only Guido agrees. --Sciencewatcher (talk) 21:15, 12 September 2008 (UTC)

Keep it civil. I think your sources there are pretty weak. They describe neurasthenia as a "predecessor" to CFS, not as the same thing, and obviously the conditions have similarities. And probably even moreso in retrospect, if cases that would now be called ME/CFS were at one time called neurasthenia. Second, the WHO classification clearly indicates that Neurasthenia and benign ME are two different things, even in two different categories. So I agree with Guido here; you will have to do better than that. Mangojuice^talk 22:14, 12 September 2008 (UTC)

In PMID 9407577 it says "Do patients with "pure" chronic fatigue syndrome (neurasthenia)" in the title. Also see PMID 8829720 which concludes "The ICD-10 'neuraesthenia' definition identifies almost all subjects with CDC-defined CFS". There aren't many references for CFS and neurasthenia, but the ones there all point the same way. That's the best you're going to get considering that nobody diagnoses neurasthenia these days. --Sciencewatcher (talk) 22:41, 12 September 2008 (UTC)

The "pure" descriptor there seems to be an attempt to alter the definition (see No true Scotsman) and the other reference says "almost." So basically it seems like people are always making qualifications in drawing parallels between neurasthenia and CFS... in a way that they do not with terms like ME. Mangojuice^talk 12:44, 13 September 2008 (UTC)

The second reference shows an overlap in symptoms between CFS and both neurasthenia and sleeping disorders. Nobody is disputing that, AFAIK. The same holds for a thousand other different disorders, but that's what they remain nonetheless: different disorders. Guido den Broeder (talk, visit) 13:40, 13 September 2008 (UTC)

But the main point is that anyone previously diagnosed with neurasthenia will be diagnosed with CFS today. Neurasthenia is a predecessor of CFS, just like ME. The definitions are slightly different, but that is the case with CFS itself. Are there any solid references showing that they are different? --Sciencewatcher (talk) 14:27, 13 September 2008 (UTC)

No, they would be and are today diagnosed with somatoform disorder. Guido den Broeder (talk, visit) 17:20, 13 September 2008 (UTC)

According to a study I read recently, the only difference between CFS and a somatoform disorder is whether the doctor can tie the illness to an emotional/stress trigger. It's on pubmed, let me know if you want more details. --Sciencewatcher (talk) 19:00, 13 September 2008 (UTC)

I am interested in reliable, relevant sources, nothing else. Guido den Broeder (talk, visit) 20:11, 13 September 2008 (UTC)

Yes, it is. It is from that Belgian CBT study, which I think you originally put into the article (although I could be wrong). --Sciencewatcher (talk) 21:14, 13 September 2008 (UTC)

Undent. FWIW - I think ME and CFS are the same thing, but neurasthenia is not the same thing. The WHO doc form Canada says that ME and CFS are the same thing, so re-naming the page is not an option. We are still bound by WP:NAME to pick the name that's most easily recognized, brief but not ambiguous, and easy to link. ME should redirect to CFS, and all the pages with ME in the title should be renamed and redirect to the equivalent CFS title. CFS is how wikipedia refers to ME, CFS and all other synonyms. WLU (t) (c) ^{(rules - simple rules)} 01:34, 15 September 2008 (UTC)

Here is a URL to the DSM IV at Google Books: [22]. Some pages are missing, but there is enough. - Tekaphor (TALK) 09:26, 15 September 2008 (UTC)

To be fair, the two pages (491, 607) that supposedly mention CFS are not displayed. Guido den Broeder (talk, visit) 09:53, 15 September 2008 (UTC)

@WLU: no, it does not say so at all (but if it did: it is not a WHO document. More countries have created such local documents; they all differ and many contain errors, and none of them is in any way official. Guido den Broeder (talk, visit) 09:57, 15 September 2008 (UTC)

Neurasthenia vs ME&CFS

Continued from the above discussion ... "anyone previously diagnosed with neurasthenia will be diagnosed with CFS today"; not necessarily, keep in mind that this was a century ago and neurasthenia could have been a massive wastebasket. The neurasthenia article states "symptoms of fatigue, anxiety, headache, impotence, neuralgia and depressed mood"; which is broad enough to include a lot of illnesses when there is a lack of knowledge about them. One paper (PMID 8491107) argues that "Neurasthenia does not necessarily represent an early forerunner of chronic fatigue. Many patients receiving that diagnosis did not complain of fatigue. Others with functional fatigue did not receive the diagnosis 'neurasthenia'." Even if most people diagnosed with CFS today would have been usually diagnosed with neurasthenia (or maybe melancholia) a century ago, medicine has moved on and we don't even know how valid neurasthenia itself was as a dependable diagnosis, and as Leonard Jason has said, "it is crucial for CFS research to move beyond fuzzy recapitulations of the neurasthenia concept".

Afterall, neurasthenia was dropped from the DSM (and was historically replaced partially by other psychiatric diagnoses?); it remains in the ICD, although it would be somewhat hypocritical to use the WHO as a reliable source to demonstrate the existence of neurasthenia ([23]) and then insist that people should dismiss the WHO's ICD system regarding the existence of "myalgic encephalomyelitis" ([24]). Obviously there is substantial overlap, including the serious issues with the definition of CFS that undermine the research, concerns about over-estimations of psychiatric comorbidity in CFS (and diluted cohorts), with the exact role of "stress" also being questioned and not so clear cut.

So it is still speculation to say we are definitely dealing with the same supposed "nervous-burnout"/stress-disorder patient, or even the same spectrum instead of a mixed bag of psychiatric illness, undiagnosed disease, and similar dysautonomic symptoms. Mangojuice already mentioned the equivocation fallacy, but let's not forget the other examples of common mistakes in medical discussions, such as the "appeal to ignorance" and/or the way stress and somatisation are used as a medical version of the "god of the gaps" (eg there is a gap in scientific knowledge, this gap is filled by psychosomatics). Lumping together heterogeneous states of chronic fatigue is problematic. CFS itself has become a sort of "nexus" for the weaknesses in medical classification and the mind-body problem; regardless of the actual nature of ME&CFS, the process should resolve some important questions and issues.

_Tekaphor (TALK) 04:21, 14 September 2008 (UTC)

Bottom line: something this dubious should not be in the text without a clear consensus among users. Guido den Broeder (talk, visit) 07:05, 14 September 2008 (UTC)

Neurasthenia should be kept as a separate article - it's used as a separate term, has its own research and now appears to be a bigger concern for the study of cross-cultural psychology and culture-bound conditions. At best the pages should mention that they were historically linked, but now they're considered different things. The ICD doesn't use the term CFS anywhere that I've seen, but if you search for CFS it does direct you to G933 where benign ME shows up - this suggests yet again that ME and CFS are considered essentially synonymous. In this case, it is a matter of selecting which to use. CFS seems to be the clear winner - the main page is called CFS, CFS gets more google hits and seems to be just more commonly used. The WHO links do not say CFS and ME are different conditions - it doesn't mention CFS at all. So it can't be used to say ME and CFS are different things, it can't really be used to say much at all. Again, why would we name the main page CFS but all related sub-pages use a completely different terminology? WLU (t) (c) ^{(rules - simple rules)} 21:10, 14 September 2008 (UTC)

That is not how the ICD is set up. If you take a look at some other disease groups, you will perhaps more easily see that terms that have the same code are not considered synonymous unless it is explicitly stated so. Now, the CFS page only looks like the main page because the ME page is missing. That will be remedied. Guido den Broeder (talk, visit) 07:31, 15 September 2008 (UTC)

Moving back

With not a single source provided to counter the combined weight of WHO, CDC and IACFS/ME, I propose to reintroduce ME/CFS into the titles of the subarticles, which is the term unanimously agreed to when the ME project started. Guido den Broeder (talk, visit) 07:57, 14 September 2008 (UTC) To accomodate WLU's concerns, I propose that we make a clear mention of the fact that CFS is the one most used in research since some time. Guido den Broeder (talk, visit) 08:47, 14 September 2008 (UTC)

Why would there be one page for CFS, ME is a redirect to that page, and no clear statement what ME actually is? The CDC statements do not seem to actually state how ME is different from CFS or what the difference is. If most of the resources used to construct the page build on resources that use ME and CFS interchangeably, why would there be a slash in the title? If you're going to move the pages back to the slash, then by the same idea you should move CFS to ME/CFS. WLU (t) (c) ^{(rules - simple rules)} 20:36, 14 September 2008 (UTC)

Reviewing the WHO ICD, there's two references when CFS is searched for. G93.3 turns up, I assume for the entry "Postviral fatigue syndrome" which has underneath it "Benign myalgic encephalomyelitis". I'm not sure how the ICD is organized, but this looks like it's treating BME and CFS as interchangeable (i.e. ME is a synonym for CFS). The other is to R53 Malaise and fatigue, with fatigue syndrome and post-viral as an exclusion criteria. The CDC has less info here on if CFS and ME are the same thing, but it suggests it is. The CDC states in one document that ME and CFS are the same thing. In another document it states that they are not, but does not state what the difference is, how ME is different from CFS. On the other hand, there are many, many pubmed documents that use the terms interchangeably with a slash. Wikipedia does not use "myocardial infarction/heart attack" as a page name. It uses one, the most wide-spread and widely recognized name except for medical pages which use the appropriate medical term. The medical establishment apparently uses both, interchangeably, but CFS does seem to be more widely used. I don't see any real reason to replace the titles as something with a series of short forms and slashes. The terms are difficult to search for, difficult to link to, and out of keeping with WP:NAME. WLU (t) (c) ^{(rules - simple rules)} 20:59, 14 September 2008 (UTC)

I trolled through google scholar looking for 2008 articles that contained the term myalgic encephalomyelitis. I found the following that specifically said ME=CFS (see this section of my user page). This is not including the many, many other articles that used ME/CFS or CFS (ME) and a variety of other terms that essentially implied they were equivalent. The advantage of the linked ones are they explicitly stated the two were the same thing. One thing I didn't find was anything that said ME was not CFS. It's quite possible I missed it though. Since the terms are functionally equivalent based on the most recent statements in peer reviewed journals, it seems clear to me that the terms are the same. They should be linked, ME names should redirect to CFS page, and it should be clear quite early in the artice(s) that ME is used by the medical establishment to mean CFS. It should also be clear, if citations can be found, that the term CFS is opposed and considered a different diagnosis by some. WLU (t) (c) ^{(rules - simple rules)} 01:19, 15 September 2008 (UTC)

And here is another. By my reading, the situation is this: CFS has, and has had, several different names. The WHO uses one (ME) and the CDC mentions it as well, though ambiguously. For the rest of the world and the scholarly community, CFS and ME are interchangeable, often included in the intro sentence of most documents, sometimes as a slash, but CFS is the predominant term. There was some discussion at the CDC that CFS and ME were different conditions, but it did not seem to come to much. Accordingly, the pages on wikipedia discussing ME, CFS and other terms, should mention the alternative names but use CFS throughout as the only wording in the body. Even if the WHO calls CFS by a different name, it does not explicitly state that CFS and ME are different. It merely uses a different name. The ICD does not have two terms in two separate sections - it has just one term and the Canadian handbook actually labels the two as equivalent. WLU (t) (c) ^{(rules - simple rules)} 01:32, 15 September 2008 (UTC)

The intention of the ME project is to revive the ME article. I suggest that you allow the ME project to continue and wait with your judgement until a mature ME article is there, rather than to keep us all busy on talk by opposing the existing consensus. An article is a better base for discussion than your user page; none of your references (and I doubt not that there are more like this) carries any weight because the authors do not research whether they are the same nor even discuss why they should be considered so; there are also some 4,000 artciles on the disorder in Pubmed alone. Guido den Broeder (talk, visit) 07:27, 15 September 2008 (UTC)

If you're talking about changing the name of CFS to ME throughout wikipedia, that should be discussed on CFS proper. I'm in process of starting a thread. Also note that reliability on wikipedia is determined by publisher and peer review. Peer reviewed journals are generally unambiguously reliable, and in this case are explicit. They aren't discounted because the author "isn't an expert on the topic". If there are experts that say ME is not the same thing as CFS, they should be presented and discussed to see what the next step is. WLU (t) (c) ^{(rules - simple rules)} 17:05, 15 September 2008 (UTC)

ME should be discussed on its own talk page, or on its project page, thanks. And we don't have to repeat what we have already done. Please stop acting like you own these pages. Guido den Broeder (talk, visit) 19:23, 15 September 2008 (UTC)

ME doesn't have it's own talk page. Because it's considered a synonym for CFS, we should be, and are, using the CFS talk page. Until ME has its own page, you can't really argue for "discussing on its talk page". ME won't have its own talk page until you can demonstrate that the majority scholarly opinion is that ME is different from CFS. There's also no wikiproject for ME. There's a guy's sub-page (User:Strangelv/MEproject), but no real wikiproject, which appears to require input from active wikipedians (Wikipedia:WikiProject_Council/Proposals). It would currently more accurately be called the CFS wikiproject anyway. WLU (t) (c) ^{(rules - simple rules)} 19:35, 15 September 2008 (UTC)

Since you have provided no new arguments nor a single source in your favour, I will go ahead and rename the articles in accordance with the ME project. Guido den Broeder (talk, visit) 01:12, 16 September 2008 (UTC)

You have no support for moving the article to your desired title. To do so now would result in even more pointless debate, potentially a move war. JFW | T@lk 05:54, 16 September 2008 (UTC)

There can be no move war because there is no consensus for WLU's moves, so surely nobody will revert a return to the ME project consensus. Which is, by the way, not my desired title at all, but the compromise that we unanimously agreed on. Guido den Broeder (talk, visit) 08:53, 16 September 2008 (UTC)

"Chronic fatigue syndrome (CFS) is the name currently used by the majority of the medical community" - is there a citation for this? If not, why not?--Tishtosh20 (talk) 00:59, 24 October 2008 (UTC)

Actually, this is a great point. There isn't a citation for this claim. I think it's accurate - a search for "Chronic fatigue syndrome" on google scholar for between 2006-8 produces 6,340 hits, while the equivalent for "myalgic encephalomyelitis" is 383 hits. It makes sense based on this (and other sources) that CFS is the preferred term, but I dislike the original research analysis required. We need a source for this statement, ideally a high-quality jouranl that states this explicitly. We don't have one, and if we did, it would solve many problems. Tishtosh20, if you can find a source for either position, you will be helping resolve this in the most fruitful way. What we really need is a good review article, in a high quality journal, that summarizes the most recent knowledge on CFS/ME. But I haven't seen one yet. Ideally, a full-text that can be shared would help.

As for the "why not", no-one has found an appropriate citation either way. One of the rare cases where we don't have to cite things is when the info is so banal, it'd be ridiculous to cite (i.e. fire is hot, the sky is blue). I don't think this is the case. This one isn't really reliable but does demonstrate a clear point - few like CFS. But a lack of specific etiology, symptom list and case definition means a more appropriate name can't be found. Even this article, which states that CFS is a bad name, doesn't call it the most preferred alternative of ME. Sourcing can only help, but I can't see myself being convinced unless it is a very good source, and given all I've seen of CFS/ME stuff, I doubt the name of the page will change to ME. It's not absolutely certain, but it just seems very, very unlikely based on what I've seen. But a sufficiently clear, reliable and authoritative source would go a long way towards increasing the credibility of a name change. WLU (t) (c) ^{(rules - simple rules)} 01:41, 25 October 2008 (UTC)

Compromise proposal

JFW, would you be content with 'Diagnoses linked to Chronic fatigue syndrome'? The main issue that I have with the current title is that it states that only the names differ, suggesting that the definitions are the same, which is obviously not the case from the page's content. This title would have the additional advantage that the page could also mention diagnoses that have incorrectly been thought to describe the same condition. We currently have no place for those. Guido den Broeder (talk, visit) 12:29, 16 September 2008 (UTC)

There would have to be sources accepted by the majority of the medical community that explicitly state that ME and CFS (as well as other conditions named) are actually different. If they're treated as synonymous that's a misrepresentation of any sources used. If a diagnosis was originally thought to be CFS or any of its synonyms but then became a separate condition then it should have its own page (i.e. neurasthenia) with perhaps a mention in the see also section. WLU (t) (c) ^{(rules - simple rules)} 15:43, 16 September 2008 (UTC)

Majority of the medical community WHERE? Palookaville, ID? That, gentlemen (and ladies if so you be), is not the world. There are other medical communities than the USA, and if Wikipedia ignores them it compromises its status. What was wrong with the previous CFS/ME description? It covered everything. All this discussion stems entirely from the unilateral decision to reclassify CFS/ME as CFS. 79.74.230.62 (talk) 18:43, 23 October 2008 (UTC)

Please stop saying this is USA versus Europe. It is sources versus nothing. There are all most 4000 citations on CFS. There are under 50 that say CFS/ME or ME/CFS. There's like a hundred that say ME and most of them are before 1988 when CFS got introduced. This is English language not just US stuff. Most papers everywhere say CFS. Wow even the place where they published the clinical definition from the Canadian group of ME/CFS is called Journal of Chronic Fatigue Syndrome So that is what the articles are called but being balanced they all say ME is a preferred name by some people nad at some places. RetroS1mone talk 02:35, 24 October 2008 (UTC)

I suggest that to count the number of citations is not relevant: it is not about bean counting. If 75% of the population think Obama is an Arab, does that make him one? It's about accuracy. I quoted two UK government sources which use ME/CFS (or CFS/ME I don't care which): I am told that this is 'nothing'. What other conclusion can I reach than that this is a USA thing?

I wish I felt that all contributors to this discussion were motivated by a desire to reach a good solution - one that satisfies all Wikipedia's aspirations. But increasingly it looks like an attempt to 'win' an argument, irrespective of the benefit or otherwise of the article. Some weird orthodoxy is being propounded here that does not appear to have anything to do with making the Wikipedia article of this illness the best it can be.

Is there anyone involved in this discussion who is prepared to take a balanced view and try to reach a sensible consensus? Or are we just slanging back and forth? I repeat - what was wrong with the previous CFS/ME description? Tishtosh20 (talk) 23:22, 24 October 2008 (UTC)

This discussion has been going on a long time, there is a consensus. You are right it is not about bean counting but it is about sources. All the journalists could conspire and say Obama is an Arab in their reliable sources, then it does not matter if two sources say he is not and it does not matter what Obama is in real life, Wikipedia would say Obama is an Arab and it would say a few people dispute it. See, information on Wikipedia is having to be verifiable not true. Good thing is, most of the time journalists and experts and authors do not conspire to say false things like Obama is an Arab.

I do not care what this condition is called. I just care, Wikipedia should use the current language to describe it. Most experts and most reliable sources say CFS, that is from USA and other places. RetroS1mone talk 23:38, 24 October 2008 (UTC)

If there was a consensus the discussion would not still be going on. The fact that it IS going on underlines the fact that there is not a consensus.

If it is not about bean-counting, then the fact (if it is one) that 'most' experts say something is not material. Can a minority verdict be dismissed in this way? And can we be selective about which sources we consider 'reliable'?

What was wrong with the previous CFS/ME description? Tishtosh20 (talk) 23:59, 24 October 2008 (UTC)

No one dismisses a minority verdict, all of the CFS articles say there is may alternate names, one of the common alternate name is benign me or ME. They say it is preferred by some people and is especially used in UK and Canada. RetroS1mone talk 00:29, 25 October 2008 (UTC)

It is kinda about bean-counting. If the experts and scholars in the relevant arena publish in reliable sources that there is/not a difference, that's what we report, to the proportion reported in reliable sources - see WP:UNDUE, WP:V and we can't make up our own definitions because of WP:OR. Consensus is not about just numbers, it's also how definitions, discussions and sources interact with policies and guidelines. We can't just say they are/are not the same, all we can do is point out that they do (if we have the sources). If the sources are unequivocal, our job is easy. If they are not, we must use editorial judgement to decide what best represents the majority. In this case, the reliability of the source is a large part of the discussion - not all journals are equal and if JAMA and NEJM say one thing but the only dissenter is JCFS, that means the JCFS will occupy less text on the page and receive less emphasis (though it could still be represented). The absolute best option is to present sources that clearly distinguish between ME and CFS - to date I haven't seen any but that doesn't mean they are not out there. I've reviewed sources presented by Guido, and found them unconvincing. There are many sources saying ME and CFS are synonymous, the few sources I have seen that suggest there are differences are, well, few, unclear, and old. But please, I really would like to see the controversy discussed, but it must be discussed based on sources, and the best thing any one of us can do is to find the sources. If you know what they are, where they can be found, what they say, please present them, suggest wording, even edit the page, and we'll work from there. The minority position HAS A PLACE! But AS the minority position. But before we can even define it, we have to be able to cite it. WLU (t) (c) ^{(rules - simple rules)} 01:08, 25 October 2008 (UTC)

Thank you, WLU: that is a very constructive response. We are in difficult territory here, as the sources themselves cannot agree on what this 'illness' is or what it should be called. I quote from the article: "The name 'chronic fatigue syndrome' itself is not universally accepted and is believed by some patients and advocacy groups to trivialize the illness."

Here's my beef. The page used to be headlined CFS/ME (or the other way round - doesn't matter). A decision was taken to remove the ME part of the title (although throughout the relevant pages many references to the combined term ME/CFS remain). For me, this skews the tone of the page in a way that is not addressed by the (otherwise excellent) references to other names, differences of opinion etc; IMHO it also suggests a more universal acceptance of the name than that which in fact exists. Naturally, one could go on forever with this ("CFS/ME/PVFS/CFIDS") and I'm not suggesting that. In view of the significant minority of ME references however, I do think that it was a retrograde step to remove ME from the article's title.

Sources, sources. I posted two UK government sources on the article talk page (not the alternative names page), both of the highest calibre I thought, which refuse to come down on the side of CFS at the expense of ME. I suggested that a Wikipedia article should likewise refuse to commit to one description or another - especially in the light of what the article so excellently describes as "a poorly understood, variably debilitating disorder or disorders of uncertain causation". I hoped by this process to contribute to the rather hot debate that I found here, and perhaps help to resolve it in a consensual manner.

The two sources are the Gibson report and the NICE guidelines CG53.

Does this help at all? Tishtosh20 (talk) 10:57, 25 October 2008 (UTC)

Very quickly, I was the one that re-named the page, based on my understanding of WP:NAME. On wikipedia, we must always work by wikipedia's policies and guidelines. Please review the policy and base your comments on that. Another policy to inform the page is WP:UNDUE - pages must represent information to the proportion of the interest in the scholarly majority. From my understanding, most people think the two are the same condition and commonly compromise by slashing the term, at least initially (CFS/ME) but from what I've seen they generally drop the ME in most cases immediately afterwards. Also, these are guidelines from agencies, which are of lower reliability than the the peer-reviewed journals, according to our guidelines on medically reliable sources. That being said, I have to review them before giving a real opinion and right now I've not the time. I will try to get to it in the near future, but if you politiely suggest other editors read them as well, you'll doubtless get a good reception. It's kinda guaranteeed. There's a place for the ME/CFS discussion, ME/CFS as the first choice after CFS (my interpretation based on what I know now) should be prominently mentioned on the page.

Also note that I've refactored the weblinks to be more compact. WLU (t) (c) ^{(rules - simple rules)} 13:26, 25 October 2008 (UTC)

If the article is renamed and rewritten to reflect that these are not just different names but alternative ways to diagnose the condition, then using CFS in the title would not be so problematic, I think. Guido den Broeder (talk, visit) 10:05, 24 November 2008 (UTC)

If there were any sources to support that assertion, it might be worth discussing. New sources can resolve this if they support this in any way. WLU (t) (c) ^{(rules - simple rules)} 02:36, 26 November 2008 (UTC)

Iceland disease

The article says that Iceland disease is currently used in Iceland. The Iceland sources I am finding say CFS. I thought Iceland disease or Icelandic disease was an old term. Does any body have good sources about this, thx. RetroS1mone talk 04:25, 25 October 2008 (UTC)

Iceland disease is an alternative name to describe the Akureyri outbreak. Logic dictates, that it was/is specifically used outside Iceland. The Akureyri outbreak is somewhat special because there were more deaths than in other outbreaks. Guido den Broeder (talk, visit) 09:58, 24 November 2008 (UTC)

Reviews and names

Carcharoth was helpful at talk for Chronic fatigue syndrome and made good suggestions, it is important we have good sources on the name conteroversy so I found some reviews in high journals about the history and the name.

Prins JB, van der Meer JW, Bleijenberg G. Chronic fatigue syndrome (review). Lancet. 2006 Jan 28;367(9507):346-55. Is helpful, many reasons. There is suggestion from some editors Chronic fatigue is USA only, and it is imperialist policy against every one else so it is good to get perspective from outside US. The authors are Dutch and the journal is Lancet, British. It is a review, better then primary, and a recent review, 2006. Quote, "Chronic fatigue syndrome (CFS) is the term that is generally accepted by scientists and mostly by clinicians for the range of complaints that patients commonly refer to as myalgic encephalomyelitis (ME) or chronic fatigue and immune dysfunction syndrome."

Ten years before Wessely S in a review said similar, ME is the patient term in UK, CFIDS in USA. Wessely S. Chronic fatigue syndrome: a 20th century illness? Scand J Work Environ Health. 1997;23 Suppl 3:17-34. A review from British author in a Scandinavian Journal. Quote, "In the popular American literature the term "chronic fatigue and immune deficiency syndrome" is preferred by the most active of the patient lobbies, while myalgic encephalomyelitis continues to be the usual label in the United Kingdom." Wessely said about ME in medicine, "Myalgic encephalomyelitis was an early term introduced in the United Kingdom in 1957 for this state, but it had little or no public or professional prominence." RetroS1mone talk 04:05, 4 November 2008 (UTC)

This is a review by a group that has a vastly different, minority view on the nature of the disease, so it is not a reliable source. They are factualy incorrect; in contrast to CFS, ME is not a term that 'patients' use for 'a range of symptoms'. They use it, as the WHO does, to denote a well-defined disease. Guido den Broeder (talk, visit) 09:53, 24 November 2008 (UTC)