Friday, December 21, 2007

ME/CFS History including ICD Diagnostic Codes

The Big Picture, history, and details are all equally important to know. Here is a 'history refresher' for all, so smarter and better planned and and coordinated illness-specific research efforts lead us all in the future. Particularly important if the USA finally discontinues the 15+ years old ICD9's and finally moves to the ICD10's, where ME once again has it's rightful Neurogenic classification of G93.3. LKW

ME - ME/CFS - CFS History by Lajla Mark

(There is a brief summary available at the bottom of this article for the ME patients having difficulties reading this rather long article)

ME - Background

"The illness Myalgic Encephalomyelitis (ME) occurred in both epidemic and endemic forms, although it was the epidemics which were easiest to recognize and which caught most medical attention", professor Rachel Jenkins says. [1]

The first recognized epidemic was considered to be Poliomyelitis in a milder form. It occurred simultaneously or following a Poliomyelitis outbreak and it occured in Los Angeles, USA, in 1934. Two orthopaedic surgeons, John Wilson and Pierre Walker, described these cases in 1935 as 'atypical poliomyelitis' [2], and Dr. Gilliam, Office of Epidemiological Studies, US Public Health Service, gave a detailed description of the disease [3].

ME has been described by L.A. Wallis in 1955 [4], E.D. Acheson in 1959 [5], and M. Ramsay in 1986. [6]

During the summer of 1955, the Royal Free Hospital, with a total staff of about 3500, experienced an epidemic of Encephalomyelitis simulating Poliomyelitis which affected more than 300 people.[7]

For the first time, in 1959, the name Myalgic Encephalomyelitis (ME) was used officially for this disease in a article by Dr. E.D. Acheson in the Lancet. [4] "From 1934-90, there were at least sixty-three outbreaks of epidemic proportions, all well documented, and distributed geographically in North America (29 outbreaks), the UK (16), the rest of Europe (11), Australasia (4), Africa (2), and Asia (1). One of the most studied, and possibly the most controversial outbreak, occurred at the Royal Free Hospital, London, in 1955, says Dr. Vance Spence, Universiy of Dundee, Scotland. List of epidemics from 1934 to 1980 The choise of the name Myalgic Encephalomyelitis was due to Dr. E.D. Acheson's [5] findings ofsignsof dysfunction in the Central Nervous System (CNS) when doing an autopsy in connection with research on some epidemic outbreaks. The scientists had no doubt about the neurological character of this disease. Since then there have been mounting evidence to support this [8].

Autopsies on ME patients confirm infection in the basal root ganglia, the latest autopsy performed on Sophia Mirza Wilson in 2006. Sophia Mirza died from ME only 32 years of age after having a horrible time - horrible beyond imagination - being incarcerated in a closed psychiatric ward.

Although first recognized in the US, it was researchers from England who first developed a definition and criteria for research and diagnosis of Myalgic Encephalomyelitis Ramsay 1988.

CFS - Background

In spite of Gilliam, Wallis, Acheson and Ramsay describing Myalgic Encephalomyelitis, new epidemics in the US apparently didn't ring a bell. In 1988 Centre of Disease Control and Prevention in US (CDC) constructed a new definition calling this "new disease" Chronic Fatigue Syndrome (CFS) (Holmes et al), because the researchers found that the symptom "profound fatigue" shared by all sufferers. Chronic Fatigue Syndrome was in fact merely the title of a working case study but for some reason a new and more suitable name for the "condition" never saw daylight.

Some researchers and doctors use CFS (Holmes et al, 1988) and ME (Ramsay et al, 1988) synonymously. However, Holmes' criteria were developed on the basis of some cluster outbreaks, thought to be due to Epstein Barr Virus. The criteria were never meant to cover ME.

When WHO classified Myalgic Encephalomyelitis in 1969 in their international classification of diseases (ICD), it was categorized as a neurological disease and listet in ICD-10, code G93.3 under "Other diseases in the brain". PVFS (Post-viral fatigue syndrome) was placed in the same category under the same code - considered to be an alternative name for ME.

Dr. Melvin Ramsay did not agree on this.

As a result most researchers outside the US called the disease Myalgic Encephalomeylitis (ME), while American researchers continued to call it Chronic Fatigue Syndrome (CFS). A confusing situation, which got worse in the years to come.

The CFS-confusion begins

While researchers in countries outside USA were quite clear about ME, American researchers were still focused on the symptom "fatigue" and not on the neurological and neurocognitive symptoms, which were the main symptoms in ME. [3]

As a consequence CDC, in 1994, found it necessary to revise the Holmes 1988-definition resulting in far more vague and broad criteria for Chronic Fatigue Syndrome Fukuda et al, 1994). These criteria allowed for many conditions, all having "fatigue" as a symptom, including some psychiatric illnesses, and did not include the characteristic neurological and neurocognitive symptoms, described by Ramsay and others before him - symptoms that were of vital significance for the understanding of the disease and for further research and treatment.

However, to treat ME and CFS as synonemous conditions proved to be an unwise move and also most incorrect, because Chronic Fatigue Syndrome, after the CDC constructed the broad criteria in 1994, no longer covered a disease entity, but turned into an umbrella term for several diseases and conditions having "unexplained fatigue" as a common symptom. The new Fukuda CFS criteria was so different from the Ramsay definition of ME, that ME and CFS could no longer be considered synonemous.

The situation is that a patient fulfilling the Ramsay's ME-definition also easily would fulfill the broader Fukuda CFS-criteria from 1994, whereas a patient fulfilling the Fukuda-CFS-criteria would not necessarily fulfill the Ramsay's ME-definition.

Although many ME-researchers outside the US did not immediately adopt the new CDC Fukuda-criteria from 1994, they did, however, in the end spread worldwide within the medical world. Some countries introduced the term ME/CFS og CFS/ME (apparently trying to get CFS - as this term was more and more used among doctors and researchers - recognized as a neurological disease like ME). However, ME was absorbed in CFS, which caused tremendous medical confusion about both ME and CFS - not to forget the trivialization of ME this caused, and still is causing, around the world. Furthermore it made both CFS - and unfortunately also ME - easy targets for psychiatrists, who certainly did their part in trying to convince goverments and health authorities all over the world that ME/CFS is a functional disorder.

The lack of recognition - correct diagnosis - correct medical and social treatment of both CFS and ME patients - and lots of misleading and insufficient research studies, often funded by governments and also insurance compagnies, cause many people - including doctors and researchers - to call this the biggest medicalscandal in history.

WHO classification of ME and CFS

When some American researchers and patient organizations realized the problems connected with the jumble of different diseases and conditions Fukuda-CFS had become, they began to express the need to change the name CFS to ME - implying that they considered ME and CFS as identical diseases.

Some patient organizations, backed up 100% by many European and Australian researchers and patient organizations worldwide, firmly insisted that if the name CFS was to be changed to ME, the Fukuda CFS criteria from 1994 had to be replaced by the Ramsay ME definition from 1988.

Centre for Disease Control and Prevention (CDC), USA, had, however, no intention of changing the name CFS. Later developments revealed the reason. In 1994 the American authority for disease classification (National Centre for Health Statistics) managed to get WHO to place CFS in ICD-10. WHO chosed to place CFS in the ICD-10 Index with reference to G93.3 - same code as ME and Post Viral Fatigue Syndrome.

This CFS reference to code G93.3 is, however, confusing because of the radically changed CFS-criteria (Fukuda 1994), that had little to do with ME.

The psychiatric lobby

When WHO's Collaborating Centre for Research and Training for Mental Health at Kings College in London in september 2001 single handedly placed ME and CFS under WHO's categori F48.0 (Mental Illnesses) in their "Guide to Mental Illness in Primary Care" and on their website, it upset the ME and CFS communities all over the world. A rapid respons was to contact both King's College in London and WHO Headquarters in Geneva in order to draw their attention to this misclassification.

WHO Headquarters in Geneva, made aware of the problem, stated that this disposition was not in agreement with WHO's classification principles. The WHO Collaborating Center at King's College was then ordered to instantly remove ME and CFS from their brochure and from their website.

This led to ME and CFS being removed from the headings in the brochure "Guide to Mental Health in Primary Care". In a paragraph named "Differential diagnosis", the King's College psychiatrists apparently tried to take advantage of the current CFS classification. They did this by suggesting ME is the same as CFS (which was classified under ICD-10 code G93.3 under neurological diseases) but that this classification is doubtful on the background of the asserted good results from treating CFS patients with CBT (cognitive behavioural therapy) and GET (graded exercise therapy). Later it became known, that 30,000 "Guide to Mental Health in Primary Care" were already sent out in 30,000 samples without the requested corrections. A correction slip was produced but this slip didn't reach all who recieved the Guide.

Next move

This situation was brought up by the Countess of Mar in a debate in the House of Lords in the English Parliament, January 22, 2004, because King's College, after first attempting in their revision of the 1. edition of "Guide to Mental Health in Primary care", placed ME and CFS under two different categories - under G93.3 (diseases in the brain) and under F48.0 (mental illnesses) - then attempted to suggest that both diseases are functional illnesses.

Directly asked, Andre l'Hours (responsible for WHO ICD) and Dr. Sereceno, WHO Headquarters in Geneve, clearly stated that "WHO has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th Edition in 1992 and versions of it during later years." "Post-viral fatigue syndrome remains under the diseases of nervous system as G93.3. Benign Myalgic Encephalomyelitis is included within this category. Neurasthenia remains under Mental and Behavioural Disorders as F48.0 and Fatigue Syndrome (note: not the CHRONIC FATIGUE SYNDROME) is included within this category. Post-viral Fatigue Syndrome is explicitly excluded from F48.0 as - according to the taxonomic principles governing the ICD-10, it is "not permitted for the same condition to be classified to more than one rubric".

(Andre l'Hours' and Dr. B. Sereceno's statements can be reached by clicking on this link) (see original thru link at the top)

Collaborating Centre at King's College hereafter promised to make the required correction in the 2. edition af their guide, which was expected to be published primo 2004.

In February 2004 the 2. edition of the guide was published and now surprisingly named "Guide to Mental and Neurological Health in Primary Care". What the King's College psychiatrists had done now was:

The terms "Postviral fatigue syndrome" and "(benign) Myalgic Encephalomyelitis" are used in cases where a pronounced fatigue has occured by a specific trigger like a virus and/or where the symptoms do not fullfil the criteria for category F48.0.

"Fatigue syndrome"both chronic and not chronic, with or without a clarified physical marker, are classified under "Neurasthenia", F48.0. In the section about CFS or CFS/ME it says:

"Chronic fatigue syndrome (CFS or CFS/ME). G93.3.

-->Actually, the term "CFS/ME' denotes the Wessely Schools psychosocial illness MODEL, and it is not recognized by the WHO. LKW

CFS is usually also referred to as (benign) Myalgic Encephalomyelitis or ME. There exists a spectrum of illnesses which together with other forms of conditions and symptoms is characterized by abnormal and unusual forms of fatigue. Whether these represent distinct entities or a variety of a common theme is uncertain. Ethiology and pathogenesis are not always known. The terminology is therefore a problem."

Other neurological diseases are included in this guide (i.e. Multiple Sclerosis and Parkinsons), which has led to protests from specialists within the neurological field. In other words - the psychiatrists still tried to code ME and CFS within the Mental Illness category - without any scientific documentation to back it up. A serious consequence was that significant medical journals became biased in more than one way. They would only accept research studies on CFS broadly defined by Fukuda 1994 arguing, that these criteria were now the internationally accepted, and furthermore they seemed to prefer studies with a psychiatric angle to CFS. In order to have their work published, researchers, who actually performed research on ME, had to call it CFS. This made it difficult for significant scientific findings to be specifically linked to ME or to CFS. Also, it led to even more confusion about the correct understanding of them both.

Lately there seems to be a tendency within psychiatry to use Chronic Fatigue (CF) to infiltrate CFS in a way that make people believe, that CF and CFS are the same thing. Research studies on CFS are often done on CFS patients but called CF, or the other way around.

When WHO released the 2006 revision af ICD-10 on their website, it gave fuel to alot of speculation since CFS seemed to have disappeared from the ICD-10 classification. Rumors began to circulate. However, the presumption, that seems closest to the truth is that ICD-10 Index (where CFS was placed) was never shown on the Internet version of ICD-10, but would still appear in a hard copy version. So far it has been impossible to get this theory - or any other theoray for that matter - verified.

Changes underway?

Almost at the same time (Summer 2006) CDC changed their CFS website, and after having erased Myalgic Encephalomyelitis from the latest version of their ICD-9CM, arguing that this term was not in use in most countries anymore, ME appeared on the website again. On the website it was, however, explicitly emphasized, that ME and CFS were not considered the same entity, but that Myalgic Encephalomyelitis was considered 'a similar disease' to CFS.

While WHO is working on ICD-11, CDC is still working on their ICD-10CM. A draft of the new CDC ICD-10CM has been published on CDC's website and interesting modifications appear to have taken place.

CDC's latest revised draft version of ICD-10CM Tabular list 2006 looks like this:

G93.3 Postviral fatigue syndrome

Benign myalgic encephalomyelitis Chronic fatigue syndrome, postviral (only)

Excludes1: chronic fatigue syndrome NOS (R53.82)

It appears that "postviral fatigue syndrome" is mentioned twice - unless CDC don't consider "Postviral fatigue syndrome" to be chronic. The term "chronic fatigue syndrome, postviral", would then describe the Post viral fatigue condition becoming chronic.

It is worth noticing that Myalgic Encephalomyelitis is again mentioned in CDC's ICD after having been missing for some years. Also, it's worth noticing that CDC, in this draft of ICD-10CM, consider ME and CFS as being two different entities - as it is also emphasized on their website on CFS.

While these lines are being written the CDC ICD-10CM draft still remains to be approved and some changes can still occur.


If this version of CDC's ICD-10CM gets approved, it will be up to those countries using the name CFS or ME/CFS, to get the CFS and ME mess sorted out and distinctly separate CFS from ME - and also distinctly separate the diseases and conditions covered by the CFS umbrella term from each other.

Because of the worldwide confusion about ME and CFS amongst physicians and health authorities - and patients for that matter - it is of vital significance to clarify and emphazise the difference between these two. We need a new era where correct medical information about what ME is - and certainly is not - is highly needed. The same goes for CFS.


Published on ME/CFS Postlisten Oct. 6th 2001 with permission from the author. Revised October 2006


1934: Since1934 several detailed descriptions of Myalgic Encephalomyelitis (ME) have been published.

1955: ME simulating Poliomyelitis first gave it the name 'atypical Poliomyelitis' in the 1950's. Later the name ME was chosen due to Dr. Acheson's findings of signs of dysfunction in the Central Nervous System when doing autopsy in connection with research on some epidemic outbreaks. The neurological nature of the disease was never in question.

1969: Since 1969 WHO has listed ME under the category "Other diseases in the brain" under code G93.3.

1988: The term Chronic Fatigue Syndrome was created by Centre for Disease Control (CDC) in the US in the 1980's on the background of what was thought to be Epstein Barr Virus outbreaks and the criteria chosen for CFS in 1988 were therefore never meant to cover ME although many doctors, not being experts, considered the criteria to be identical to ME.

1994: Because physicians and scientists focused on 'fatigue' more and more instead of on the neurological symptoms, certain pyschiatrists began to show a huge interest in CFS and had more and more influence on the perception of CFS. As a result CDC decided in 1994 to revise the 1988 CFS criteria. Had there been any resemblance between ME and CFS before it totally disappeared with these new criteria, which made CFS an umbrella term allowing the inclusion of alle kinds of diseases and conditions having 'unexplained fatigue' as a major symptom. WHO listed CFS (apparently with the understanding that CFS was a similar disease to ME) in IDC-10 Index with reference to code G93.3. The psychiatric influence continued to grow and because the psychiatrists considered ME to be synonymous to CFS, ME little by little got 'melted' into the term CFS, having a still bigger impact on how ME was understood and treated. Also along the way money was only granted for research studies in CFS, and ME slowly became 'displaced' and at the end receiving no more funds for research. This was due to the gigantic and widespread confusion about what ME was and what CFS was. The ME sufferers have paid a unacceptable high price because of this - by many called the biggest scandal in medical history.

2001: This was the year when the psychiatric lobby tried single handedly to classify ME and CFS under the WHO category of Mental Health (F48.0), considering them both to be functional disorders. Thanks to worldwide protests WHO managed to prevent this happening. But WHO's Collaborating Centre at King's College in London managed to publish "Guide to Mental and Neurological Health in Primary Care", including both ME and CFS and claiming that the terminology was 'uncertain' as 'ethiology and pathogensis was not always known'.

2006: After having been erased from CDC's IDC for years, ME was again mentioned in CDC's draft to their ICD-10CM and claimed not being considered identical to CFS but as a 'similar disease'. At the same time, the CDC seem to struggle with the many different varieties of 'fatiguing conditions' in their classification system, including psychiatric disorders.

What we must create now is a new era where correct information about what ME is - and certainly is NOT - must be widespread. - This goes for CFS as well.

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