Talk:History of ME/CFS

Initial discussion

History

Drafting for ME/CFS history

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

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

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

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

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

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

Since inception, the condition has been steeped in controversy. Despite continuous research and many findings, indicating also likely subsets of patients, the present state of study on this condition is fragmented and contentious.

ME/CFS international classifications

Drafting for subheading of History

Attempts to describe conditions similar to ME/CFS date back to at least the 17th Century. The outbreak that gave it one of its most common names, Myalgic Encephalomyelitis, occurred in 1955 and formed the basis of descriptions by Achenson and Ramsay

The World Health Organization's (WHO) International Classification of Diseases (ICD), mandates the international classifications on health so that there is a consensual, meaningful and useful framework which governments, providers and consumers can use in health fields across the world. It should be noted that many more terms are listed in the alphabetic index of the (ICD), and not all of the terms may appear in the tabular list.

ICD-8

Since its introduction into the eighth edition of the WHO ICD-8 in 1969 (code 323), (Benign) Myalgic Encephalomyelitis has been classified as a disease of the central nervous system.

ICD-9

The term “benign myalgic encephalomyelitis” appears in the 1975 ICD-9 alphabetic index, and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term “postviral syndrome” was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions.

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

ICD-9CM

Since 1979 the U.S. presently has used a clinical modification of WHO's ICD 9th revision (ICD-9-CM), and ME is under index: "Encephalomyelitis (chronic) (granulomatous) (hemorrhagic necrotizing, acute) (myalgic, benign) (see also Encephalitis) 323.9."

For CFS, a modification to the alphabetic index was made effective in October 1, 1991 to direct users to code 780.7, Malaise and fatigue, the same code used to identify cases of postviral syndrome. In 1998, a new five-digit code included 780.71, Chronic fatigue syndrome, consistent with the WHO version of ICD-9. Chronic fatigue syndrome is classified in tabular list: "Symptoms, Signs and Ill-Defined Conditions," under the sub-heading of "General Symptoms".

ICD-10

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

ICD-10CM

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

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

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

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

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

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

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

Sounds more like more controversy than history!!!!

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

Problem is history needs to be written by the victorious?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Syndrome

- fatigue F48.0

- - - chronic G93.3

- - - postviral G93.3"

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

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

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

ICD-10,

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

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

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

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

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

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

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

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

Moved proposed new material from talk History Chronic fatigue syndrome to Talk:ME/CFS history.Ward20 (talk) 21:12, 2 April 2008 (UTC)

Marked material incorporated from talk into article. Ward20 (talk) 04:45, 4 April 2008 (UTC)

Marked out more material incorporated from talk into article. Ward20 (talk) 18:48, 5 April 2008 (UTC)

Moved proposed new material from talk Classification Chronic fatigue syndrome to Talk:ME/CFS_history.Ward20 (talk) 19:08, 5 April 2008 (UTC)

Stikeout more duplicate or incorportated material. Ward20 (talk) 19:18, 5 April 2008 (UTC)

Retitle Classification. Ward20 (talk) 19:23, 5 April 2008 (UTC)

Work on summary of classifications. Ward20 (talk) 21:02, 18 April 2008 (UTC)

I think we should go ahead and post this in its present form and modify when new facts emerge. Jagra (talk) 04:39, 29 April 2008 (UTC)

Just need to finish last two refs and it should be ready. Ward20 (talk) 05:53, 29 April 2008 (UTC) Done. Ward20 (talk) 03:35, 30 April 2008 (UTC)

The Term 'Chronic fatigue syndrome'

Regarding PMID 14438664 the Italian wording of the paper is;

"UN NUOVO MEDICAMENTO MELLA TERAPIA DELLA SINDROME DA STRAPAZZO CHRONICO" I am informed that Strapazzo is "a sickness after working too long or hard" = fatigue. In which case this would be the first recorded use of the term in the US National Library of Medicine. Jagra (talk) 05:10, 16 April 2008 (UTC)

"a sickness after working too long or hard = fatigue." has nothing to do with this article which is a history of ME and CFS, not exhaustion or burnout which are differentials.

The "1959" dated paper someone mentioned above must be a typo.

I reduced the neurasthenia blather as that has little to do with the article also, since it was never considered similar to ME until ME was destroyed by the CFS revisionism. ME was epidemic, viral, exertional and often relapse-remitting, sometimes progressive, with agor animi and many horrendous symptoms while neurasthenia wasn't.

The Royal Colleges may believe the term CFS was "most representative" but there was widespread opposition from the ME community. I guess patient opinions don't matter on a pompous web encyclopedia. In what other area of medicine is it recognised that terminology is stigmatising and (sometimes that it's) misleading yet the profession doesn't give a damn? Mention should be made of the IACFS name change and 2003 Canadian reintroduction of "ME".

It's not always clear enough where the ICD codes are talking about the USA specifically. —Preceding unsigned comment added by 62.69.37.5 (talk) 10:14, 22 October 2008 (UTC)

What is listed by Wikipedia as the ICD9 is in fact not the ICD9 at all, but a local extension. Guido den Broeder (talk, visit) 09:11, 24 November 2008 (UTC)

ICD-10-CM (2009 Update)

From discussion here [5]

ICD-10-CM (2009 Update) [6] unambiguously separates CFS from PFVS/ME

(p. 358) G93.3 Postviral fatigue syndrome [aka] Benign myalgic encephalomyelitis Excludes1: chronic fatigue syndrome NOS [no other symptoms] (R53.82)

(p. 1340) R53.82 Chronic fatigue, unspecified [aka] Chronic fatigue syndrome NOS [no other symptoms] Excludes1: postviral fatigue syndrome (G93.3)

The confusing category "Chronic fatigue, postviral" seems to have disappeared. Sam Weller (talk) 12:18, 23 June 2009 (UTC)

More than one CDC?

I don't know anything about medicine, or USA, so I get confused reading the current "Case definitions (1986 onwards)" section.

There is one "The CDC first ignored their findings", and then, two paragraphs down, there is "The U.S. Centers for Disease Control & Prevention (CDC) recognize CFS as a serious illness", inluding a link to CDC.

I would expect the first mention of CDC to be the full name and a link, unless there are more than one CDC. I don't want to correct this, since I don't know what the first CDC refers to. Sverrehu (talk) 18:29, 23 May 2024 (UTC)