ME/CFS history

ME/CFS, also known as Chronic fatigue syndrome and many other names,

Timeline
In 1681, the diagnosis of muscular rheumatism was introduced by Thomas Sydenham, which according to Hyde, is likely to have included cases of ME.

Sir Richard Manningham in 1750 published his description of febricula or little fever, an antiquated diagnosis which has also been attributed to some cases of ME by Shepherd.

In the 19th century, neurologist George Miller Beard popularised the concept of neurasthenia, in which symptoms included; fatigue, anxiety, headache, impotence, neuralgia and depression. This concept remained popular until well into the 20th century, although by then this diagnosis was viewed as primarily behavioural rather than physical, and to exclude postviral syndromes. It has largely been abandoned as a medical diagnosis.

In 1938 Gilliam made a detailed description of an illness that resembled poliomyelitis, interviewing patients and reviewing records of one of several clusters which had occurred in Los Angeles, United States in 1934. Most notably, the Los Angeles County Hospital outbreak infected all or most of its nurses and doctors. His common "atypical poliomyelitis" features of rapid muscle weakness, vasomotor instability, clonic twitches and cramps, ataxia, severe pain usually aggravated by exercise, neck and back stiffness, menstrual disturbance and dominant sensory involvement et cetera, constituted a twenty-point definition which was later viewed as the first recognisable description of ME.

The British public eye was caught by several outbreaks of a polio'-resembling illness in the 1950s, and by now several tens of epidemics had occurred worldwide, including those in Iceland, Norway and New Zealand (see ME/CFS outbreaks). A significant outbreak at the Royal Free Hospital Group in London occurred in 1955, and one of its current common names, Myalgic Encephalomyelitis was formed from the basis of descriptions by Achenson and Ramsay. Afterwards, it was established that the disorder was primarily found among the general population and the epidemic form was the exception. Autopsy findings, both on monkeys and on the rare human casualties, led to the conclusion that the disorder was caused by inflammation of the brain and the spinal cord, particularly the afferent nerve roots, and in 1956 it was named accordingly as myalgic encephalomyelitis, reflecting a presumed neuroimmune etiology.

Although non-epidemic cases were recognised, the disorder was in 1970 dismissed as mass hysteria by two psychiatrists. They were strongly criticized (Gosling; Hopkins; Galpine; Scott; Mayne: 1970 BMJ),(Compston, 1978 BMJ) for not adequately investigating the patients they described. In a 1978 symposium held at the Royal Society of Medicine (RSM) there was clear agreement that ME is a distinct disease entity, and new pathology findings were discussed.

The illness gained national attention in the United States when the popular magazine Hippocrates ran a cover story of an epidemic at Lake Tahoe Nevada in the mid-1980s. The designation Chronic Epstein-Barr Virus was in use in the U.S., but the magazine used the term "Raggedy Ann Syndrome" to note the fatigue and loss of muscle power patients felt.

After investigating the Lake Tahoe cluster, Centers for Disease Control & Prevention researchers attached a different kind of name to the phenomenon: chronic fatigue syndrome, involving some of the symptoms rather than disease taxonomy. They published the first working case definition for CFS in 1988. Research increased considerably, and more so after the criteria were relaxed in 1994.

In the United Kingdom, the Chief Medical Officer Kenneth Calman requested a report from the medical Royal Colleges in 1996. This led to the publication of a joint report in which the term "chronic fatigue syndrome" was found to be most representative. This was followed in 2002 by a further report by the new CMO, Liam Donaldson.

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. The U.S. Centers for Disease Control & Prevention (CDC) have now recognized CFS as a serious illness and launched a campaign in June 2006 to raise public and medical awareness about it.

ME/CFS international classifications
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.