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HISTORY OF CHRONIC FATIGUE SYNDROME (CFS) AND MYALGIC ENCEPHALOMYELITIS (M.E.)
Myalgic Encephalomyelitis (M.E./Chronic Fatigue Syndrome a New Disease?
From Neurasthenia to Chronic Fatigue Syndrome (C.F.S.)
Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (C.F.S) in Europe.
C.F.I.D.S/ME in North America.
Chronic Fatigue Syndrome in the Rest of the World.
The popular image of chronic fatigue syndrome (CFS) or myalgic encephalomyeltis (ME) 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."
So is the illness that new? Despite this popular belief, it would seem that conditions similar to ME/CFS 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. In the case of Florence Nightingale, her illness began after she returned from the Crimean War and spent years housebound, too fatigued to talk to more than one visitor at a time (Wessely et al. 1999; Shepherd, 1999; Macintyre, 1998).
In the mid-nineteenth century the term 'neurasthenia' was popularised by an American psychiatrist, George Beard, in 1869 for an illness that had many similarities to ME or CFS. 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." Thus one can see that there are many similarities with modern day ME/CFS and neurasthenia (Wessely et al., 1999).
So if it isn't a new disease, why has it only recently been increasingly recognised?
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. The consequence of this, as Wessley et al. (1999) argue, was that the failure of the Victorians to provide satisfactory answers to this dispute, made it inevitable in the 1980's that "both doctors and patients would experience an almost identical sequence of claim and counter claim over the legitimacy or otherwise" of ME and CFS. Consequently, the medical profession has only recently started to increasingly accept the condition. For instance, the illness in the UK was not recognised officially by the Chief Medical Officer until 1998, and only after years of controversial debate within the medical profession.
After the fall in popularity of neurasthenia, two episodes of ME/CFS in subsequent decades attracted particular attention, both involving doctors and nursing staff.
The Los Angeles Outbreak (1934)
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. Their symptoms essentially composed of:
· Long-duration muscle pain, tenderness, weakness, as well as sensory symptoms
· Memory lapses, difficulty concentrating, sleep disturbance, emotional instability, and being unable to walk even small distances without suffering from fatigue (Macintyre, 1998).
The Royal Free Outbreak (1955)
This is perhaps the best-known incidence of ME/CFS 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.
The most curious element was that only 12 of the 292 people ill were patients already in the hospital during the course of the epidemic. The initial symptoms developed from a 'flu-like malaise' and became more pronounced after a short period of remission, when a new set of symptoms arose. The most pronounced clinical feature of the condition was extreme muscle fatigue after very minimal exertion; and other symptoms included problems with brain function (especially short-term memory and concentration) headaches, blurred vision, and unusual skin sensations. Medical examination afterwards indicated that the central nervous system had been affected in 74% of the patients (Parish, 1978; Shepherd, 1999; Macintyre, 1998).
Although the two incidents at in Los Angeles and the Royal Free Hospital are the most well known and publicised, there have also been over 70 smaller outbreaks around the world (Shepherd, 1999).
In the UK a number of outbreaks, albeit of a smaller nature, occurred around the country such as at Middlesex Hospital in 1952, Newcastle in 1959, and at London's Great Ormond Street Hospital in 1970-1 (where almost 150 cases occurred).
The UK has also been the source of much good work, much of which has stemmed from work undertaken by Professor Behan in the last two decades as well as Dr. Ramsay (who was the first doctor to acknowledge ME/CFS in the country). As a result of this, the UK along with the USA is at the forefront of research into the condition. For a good account of research being undertaken consult Wessely et al. "Chronic Fatigue and its Syndromes" (1999) as well as Dr. Shepherd's (1999) aforementioned book.
Iceland experienced an outbreak in 1948-9 of ME/CFS in a small town in the north of the island called Akureyri. The incident affected in excess of 1000 people. What proved to be particularly interesting about the condition was that in a subsequent polio epidemic on the island in 1955, the same town was apparently unaffected. As a result, it has been argued that the virus that 'triggered' the ME/CFS outbreak resulted in a level of immunity to polio (Macintyre, 1998). The origins of the outbreak led it to be called 'Icelandic or Akureyri Disease' (Wessely et al., 1999). Information suggests that the condition is generally well-accepted and supported in the country (Shepherd, 1999).
The Netherlands appears to have done much in advancing the cause of ME/CFS, with apparently 70% of the medical profession acknowledging ME/CFS as a valid condition, and a substantial amount of research work being carried out (Shepherd, 1999).
In Italy, there is also much good research work being done into the condition.
NORWAY & SWEDEN
There appears to be a growing acceptance of the condition in Norway, although many still find it hard to obtain a diagnosis and get good information on how to manage the condition. In Sweden there is a small amount of research taking place.
Despite much hostility, there appears to be evidence that the condition is slowly being acknowledged. However, despite these improvements, the quality of support and research provision still lags behind the UK and USA (Shepherd, 1999).
REMAINDER OF EUROPE
Unfortunately, aside from some minor research being carried out in Belgium, there appears to little research being done in the rest of Europe. Some countries such as France, Spain and Portugal seem to be particularly lacking in terms of medical and self-help support groups (Shepherd, 1999).
In the USA, despite the occurrence of additional smaller outbreaks, it was not until a further incident unfolded at Lake Tahoe in Nevada during 1985 that the US public and media really took notice. Events took place towards the end of 1984 when a number of previously healthy adults came down with an unusual 'flu-like' illness followed by symptoms linked with ME/CFS such as muscular fatigue and cognitive problems. Blood tests taken from those affected failed to reveal anything unusual, and this led a number of doctors to become sceptical as to whether the patients were actually physically ill.
Around the same time and stimulated further by the Lake Tahoe event, researchers began to look into the possible relationship between the virus linked with glandular fever, the Epstein-Barr virus (EBV). Medical researchers such as Drs. Cheney and Peterson began to speculate as to whether the symptoms of sore throats, raised glands and headaches that those at the Lake experienced could be caused by glandular fever (infectious mononucleosis). Papers around the same time, from Israeli and American researchers, appeared in high-profile medical journals such as the 'Lancet' (Tobi et al., 1982) and 'Annals of Internal Medicine' (Jones et al., 1985; Straus et al., 1985) pursuing this line of enquiry. Many researchers wondered whether, as the Epstein-Barr virus belongs to the herpes family of viruses which can stay dormant in the body, the symptoms could be due to a reactivation of the virus (Wessely et al., 1999).
However, the findings showed that although around three-quarters of the patients had raised antibodies to EBV, the remainder had normal or even no EBV antibodies. Their theory also became problematic due to the fact that EBV antibody tests are particularly difficult to interpret and that the spectrum of test results from the patients were similar to what would be anticipated from normal healthy adults from a common background. Furthermore, most people by the age of 30 have been exposed to the virus, with only a few going on to develop glandular fever (Wessely et al. 1999; Shepherd, 1999).
'Chronic Epstein-Barr Disease'
Despite these questions, the US media quickly picked up on it, with publications such as Newsweek calling it 'the malaise of the 80's', while others referred to it as 'yuppie flu' as a great number of those taken ill were young, active professionals. Although there was still uncertainty over the implication of the glandular fever virus, the term 'Chronic Epstein-Barr Disease' or 'Chronic Mononucleosis' caught the public's imagination, and became the commonly used term for the condition. Subsequently, further attention became focused on a recently discovered virus in the same family, Human Herpes Virus Type 6 (HHV-6) (Wessely et al. 1999; Shepherd, 1999).
In Canada, there does not appear to have been any major clusters of the illness and as a consequence the condition has received less attention and awareness. Nevertheless, efforts from the support group, ME Canada, has helped increase recognition of the illness in the country.
One of the earliest incidences of ME/CFS in Australia occurred in Adelaide in 1949, when 700 people were admitted to hospital with a ME/CFS like illness. Australia has also been a great source of research into the condition, especially into aspects of immunology, infection and management. This led, for instance, to the creation of a Working Group by the Royal Australian College of Physicians in 1998, which gave instructions on how to best diagnose and manage people with ME/CFS (Shepherd, 1999).
In New Zealand, an outbreak of ME/CFS in the South Island region of Otago in 1984, led to the illness being dubbed 'Tapanui Flu'. Those affected by the condition initially developed a 'flu-like malaise' and suffered from debilitating fatigue for several weeks afterwards. A subsequent 10-year study on 21 of those affected, in the journal, Archives of Internal Medicine, showed that 16 of the 21 had been able to achieve an almost full-degree of functioning by the end of the ten year period (Levine, 1997).
Past research in New Zealand has tended to focus on retroviruses, immunological aspects, and on haematology (looking into potential abnormalities in red blood cells). There also seems to be an increasing acceptance of ME/CFS in the country and support group provision is good (Shepherd, 1999).
Curiously, in South Africa, a similar incident to the Royal Free Hospital outbreak in the UK, occurred in Durban many thousands of miles away a few months earlier. In common with most outbreaks, there were possible connections with polio.
Unfortunately, the condition is still only very gradually starting to be accepted by doctors and there appears to be a lack of good quality information on the subject (Shepherd, 1999).
Research in Japan has tended to focus on immunological abnormalities linked with the condition; on muscle abnormalities, especially carnitine deficiency; and the influence of certain potential viruses. So far Japanese research into the possibility of carnitine deficiency and its impact upon muscle fatigue (Kuratsune, 1994) has been supported by subsequent work in the UK (Majeed, 1995).
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 Manningham, R. (1750) 'The symptoms , nature, causes and cure of the
februlica or little fever; commonly called the nervous or hysteric fever; the
fever on the spirits; vapours, hypo or spleen,' 2nd edition, J. Robertson,
London p.52-3. Cited in Shepherd, C. (1999) 'Living with M.E.' p.11.
 Young, D.A.B. (1995) 'Florence Nightingale's fever,' British Medical Journal, 311, p.1697-9.
 Field, E.J. (1990) 'Darwin's illness,' Lancet, 336, p.826.
 Deale et al., (1894) 'Neurasthenia in young women', Am. J. Obstet., 29:190-195 (cited in Wessely et al. (1999) 'Chronic Fatigue and its Syndromes' p.105.
 Cobb, I. (1920) 'A Manual of Neurasthenia (Nervous Exhaustion), (cited in Wessely et al. (1999) 'Chronic Fatigue and its Syndromes' p.105.
 Neu, C. (1920) 'Treatment and Management of the neurasthenic individual,' Medical Record, 97: p.341(cited in Wessely et al. (1999) 'Chronic Fatigue and its Syndromes' p.106.
 Wessely et al. (1999) 'Chronic Fatigue and its Syndromes' p.120.
 Parish, J. (1978) 'Early outbreaks of 'epidemic neuromyasthenia,' Postgrad, Medical Journal, 54: 711-717.