A Short History of Myalgic Encephalomyelitis
“What's in a name?
That which we call a rose by any other name would smell as sweet.”
The popular image of Myalgic Encephalomyelitis (M.E.) over the past several decades has generally tended to view the condition as being that of a new illness - one that has arisen in the 20th century. This image has been reinforced by the media and some of the popular (and professional) literature on the condition, with headlines and titles such as ME: The New Plague.
M.E. has been called "The Disease of a Thousand Names” (David S. Bell, MD, Lyndonville, Pollard Publications, 1991), highlighting the vast number of names used to describe this controversial illness at different times and in various parts of the world. Aside from Myalgic Encephalomyelitis,
some other names used include:
- Akureyri Disease
- Benign Myalgic Encephalomyelitis
- Chronic Fatigue Syndrome
- Chronic Fatigue Immune Dysfunction Syndrome
- Chronic Infectious Mononucleosis
- Epidemic Myalgic Encephalomyelitis
- Epidemic Neuromyasthenia
- Iceland Disease
- Myalgic Encephalitis
- Myalgic Encephalopathy
- Post-viral Fatigue Syndrome
- Raphe Nucleus Encephalopathy
- Royal Free Disease
- Tapanui Flu
- Yuppie Flu (pejorative)
So is the illness that new? Despite this popular belief, it would seem that conditions similar to M.E. have been around for considerably longer than is generally assumed. The mixture of a broad array of neurological and muscular symptoms that can occur after an infective illness can be traced back into history. For instance, as far back as 1750, Sir Richard Manningham reported a syndrome referred to as 'Febricula' (or 'Little Fever') that had a large number of symptoms but was hard to objectively diagnose. In addition, there have been suggestions in recent well-regarded medical journals such as the Lancet and British Medical Journal that historical figures such as Florence Nightingale and Charles Darwin may have suffered from a similar illness.
Florence Nightingale photographed by Lizzie Caswall Smith in 1910.
In 1869 the term 'Neurasthenia' was popularised by an American psychiatrist, George Beard, in Neurasthenia in Young Women, for an illness that had many similarities to M.E. The condition was thought to be "a disease of the nervous system...characterized by enfeeblement of the nervous force..." Young women appear to have been particularly susceptible to it and its onset was frequently 'triggered' by an infection. Other quotes describe neurasthenia as a "...condition of nervous exhaustion, characterised by undue fatigue on [the] slightest exertion, both physical and mental... the chief symptoms are headache, gastrointestinal disturbances, and subjective sensations of all kinds". Although the term was used very broadly, chronic fatigue was seen as the “primary or essential symptom" with "its cardinal characteristics being an inordinate sense of physical or mental fatigue". The term 'Neurasthenia' began to be used to encompass a range of non-specific symptoms and consequently the usage of the term began to wane. Interestingly, in a similar manner to recent medical debate, the medical profession became deeply divided and polarised on the issue, with there being those who strongly felt it was a physical illness and others who disputed its validity.
After the fall in popularity of 'Neurasthenia', two episodes of M.E. in subsequent decades attracted particular attention, both involving doctors and nursing staff:
- The first of these, which occurred at the Los Angeles County General Hospital in 1934, was the first ever recorded outbreak of the condition. Initial thoughts at the time believed the illness might be linked to Polio, but as the patients' muscles, albeit weakened, did not waste, this was subsequently not deemed to be an accurate explanation of events. Around 200 members of staff contracted the condition and over 50% of them were still unable to work six months later. Epidemiological study of an epidemic diagnosed as poliomyelitis, occurring among the personnel of the County General Hospital during the summer of 1934 was reported in a Public Health Bulletin in 1938.
- The Royal Free Outbreak is perhaps the best-known incidence of M.E. on a large scale in the UK. The incident occurred over a four-and-a-half-month period during the late spring of 1955. After admitting a number of people with unusual symptoms, events at the hospital then subsequently dramatically unfolded when, in July of that year, almost 300 members of staff were taken ill (of which 255 had to be hospitalised). As a result, the hospital was forced to close until the early part of October. Dr Melvin Ramsay of the hospital’s Infectious Diseases department coined the term Myalgic Encephalomyelitis, referring to the effects on the muscles, brain and nerves. This original definition by Dr Melvin Ramsay is regarded as the best clinical description for the illness; please see The Symptoms of Myalgic Encephalomyelitis for further details.
There have been numerous clusters and epidemics around the world, although the incidents in Los Angeles and at the Royal Free Hospital are the most-well known. MEpedia provides an interesting chronology of key events in the Important events timeline.
In 1988 the term 'Chronic Fatigue Syndrome' (CFS) was coined by scientists in Chronic fatigue syndrome: a working case definition (Holmes et al.) to describe a condition or set of conditions characterised by fatigue and other symptoms. It is the name currently used by the majority of the medical and scientific community. Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) is commonly used by patients and some doctors in the USA because of what they believe is the inaccuracy and the negative stigma attached to 'Chronic Fatigue Syndrome'. The term calls attention to the immune dysfunction in patients, which extensive research suggests is an integral part of the illness.
International May 12th Awareness Day was launched in 1992 by Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (no longer active). Tom Hennessy was based in the USA but understood that it needed to be an international event; he designated 12 May as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND). The International May 12th Awareness Day Countdown Clock is accompanied by a more detailed history.
Awareness Ribbons are available from the M.E. Support Online Shop.
In October 2009, a study published in the journal Science reported an association between a retrovirus Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and Chronic Fatigue Syndrome. The editors of Science subsequently attached an Editorial Expression of Concern to the report to the effect that the validity of the study "is now seriously in question". In September 2011, the authors published a Partial Retraction of their 2009 findings and this was followed by a Full Retraction by the magazine’s Editor-in-Chief, after the authors failed to agree on a full retraction statement. Also in September 2011, the Blood XMRV Scientific Research Working Group published Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-laboratory Study which concluded "that currently available XMRV/P-MLV assays, including the assays employed by the three participating laboratories that previously reported positive results on samples from CFS patients and controls (2, 4), cannot reproducibly detect direct virus markers (RNA, DNA, or culture) or specific antibodies in blood samples from subjects previously characterized as XMRV/P-MLV positive (all but one with a diagnosis of CFS) or healthy blood donors". In December 2011, the Proceedings of the National Academy of Sciences published a similar Retraction for an August 2010 paper.
The XMRV controversy received wide media coverage and led to uproar among patients. One researcher reported verbal abuse after publishing a paper indicating that early studies suggesting a link between CFS and the XMRV virus were flawed. As a result, she decided not to pursue any further research into M.E./CFS. Another changed her phone number and talked to the police. On 29 July 2011, BBC Radio 4's Today programme reported on a 'Torrent of abuse' hindering ME research. The ME Association's Dr Charles Shepherd stated the abuse of researchers was unacceptable, but that patients had a justifiable complaint that almost no UK government funds are devoted to biomedical research for the illness. This remains an incredibly controversial field but M.E. Research continues to yield insights into this mysterious disease.
In 1998 the then Chief Medical Officer, Sir Kenneth Calman, announced the setting up of a Working Group on CFS/ME, to consider how the National Health Service might best provide care for people of all ages who have this complex illness. A joint Royal Colleges report entitled Chronic Fatigue Syndrome: Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners provided a starting point for subsequent deliberations and assessments. This was followed in 2002 by A report of the CFS/ME Working Group by the new CMO, Liam Donaldson. It concluded that M.E. was a "genuine" disease, and that "patients should not be dismissed as malingerers". This led to the development of guidelines on diagnosis and treatment by the National Institute of Clinical Excellence (NICE) in 2006. Despite this landmark, many patients in the UK still encounter disbelief and rejection by their medical attendants. You will find more detailed information on the NICE guidelines in Myalgic Encephalomyelitis Diagnosis, Treatment & Prognosis.
There have been a number of clinical criteria published since Dr Ramsay's definition, including Myalgic encephalomyelitis: International Consensus Criteria from the Journal of Internal Medicine in 2011, although never with all-round agreement. The different case definitions used to research the illness may influence the types of patients selected for studies, and research also suggests subtypes of patients exist within the heterogeneous illness. Ellen Goudsmit, PhD, FBPsS, believes that "the diagnostic confusion between what are two quite separate conditions is unhelpful both for sufferers and for the understanding of both conditions". FoodsMatter carries three of her articles on the subject: Classic ME: the basics which defines M.E.; ME or CFS, that is the question which explores the differences between the two conditions; and ME: Chronic Fatigue Syndrome or a distinct clinical entity, a fully referenced academic paper from which the two articles are drawn.
In February 2015, a report from the United States Institute of Medicine called the illness a "legitimate" disease that features five main symptoms and should be taken seriously by physicians. They also recommended that Chronic Fatigue Syndrome be renamed 'Systemic Exertion Intolerance Disease' to better reflect the seriousness of its effect on patients. Doctors have had to rely on the Centers for Disease Control and Prevention Case Definition for Chronic Fatigue Syndrome created in 1994, which was intended mainly to help researchers get a better handle on what at the time had not been conclusively determined to be an actual illness. The report has received mixed reactions, with particular attention to the proposed name change.
The battle rages on with strong, even passionate, feelings on every side of this issue. The one thing just about every patient agrees on is that there should be more emphasis on research into the cause and cure than on a name. This debate will continue until a universally accepted name and diagnostic criteria can be agreed upon. You can follow developments and share insights on the M.E. Support Facebook Page.