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Coming in from the cold

by Dr Derek Pheby(more info)

listed in cfs me, originally published in issue 25 - February 1998

Chronic Fatigue Syndrome (CFS) or Myalgic Encephalo- myelitis (ME) is an illness that affects many millions of sufferers world-wide. For many decades, a substantial proportion of medical practitioners, often a majority, have been unconvinced even of the existence of the disease, with the result that CFS/ME patients have had to sustain a double whammy. They have had to live with an extremely distressing condition, with all its attendant symptoms ranging from fatigue that is at times almost unendurable to severe and often unremitting pain in muscles, and headache. At the same time, they have frequently encountered medical attitudes ranging from scepticism to frank disbelief, and have as a result had to sustain social stigmatisation, inappropriate labelling, and the imposition of treatments which were at best irrelevant and at worst positively harmful.

The uncertainty that has surrounded CFS/ME is reflected in the large number of different names by which the disease is known. 'ME' itself is well-known as a name and is well-established in this country. However, it is somewhat misleading in that 'myalgic' implies that muscle pain is the most prominent symptom, whereas the symptomatology can be very varied, and frequently fatigue or headache predominate. Similarly, 'encephalomyelitis' implies a particular type of underlying brain pathology which is not in fact found in this condition. The term 'Chronic Fatigue Syndrome' (CFS) is generally preferred in North America, and is gaining ground in the UK as well. In many ways it is to be preferred to ME, as it does not imply any incorrect assertions about the nature of the disease, but it has the drawback of being unspecific as many other conditions, e.g. anaemia and hypothyroidism, also cause chronic fatigue.

It is not for nothing that ME, or CFS, has been called 'the disease of a thousand names'. While confusing, consideration of these many names is also illuminating about the disease itself and about scientific and social attitudes towards it. Some of the names, for example, are place names (e.g. Tapanui flu, Akureyri disease, Royal Free disease), after locations where large-scale outbreaks of the disease occurred. This indicates one of the salient facts about the illness, that it occurs in both epidemic and endemic forms. Major outbreaks occur quite frequently, but most cases occur sporadically, not in major outbreaks. Other names reflect scientific attitudes by suggesting possible pathological mechanisms. In addition to CFS itself, such names include Chronic Immune Dysfunction Syndrome, Multiple Chemical Sensitivity Syndrome, and Postinfectious Fatigue Syndrome. They tend to be speculative, and are often based on very little scientific evidence. Thus it would be likely that in most cases the disease is sparked off by a viral trigger, and in many cases immune dysfunction is a feature of the illness, but it is not yet clear whether this immune dysfunction is a cause or an effect of the disease.

One name that was in vogue some years ago, which has now, mercifully, largely disappeared, is 'Yuppie Flu'. This was a name that was unsatisfactory on every possible count. 'Yuppie' implied that the illness was a fairly recent development, because yuppies have only been around for fifteen or twenty years, and also that this was an illness that was largely restricted to the chattering classes, to basically parasitic people very prone to exaggerate their ailments and make a lot of fuss about nothing. The addition of the word 'Flu' compounded this implication, by suggesting that this was a basically trivial disease.

All these implications were wrong. Evidence now available suggests that the disease has been around for a very long time, and that it is probably the same condition as that labelled 'neurasthenia' or ''neuromyasthenia' by nineteenth-century physicians. Elizabeth Barrett Browning was a probable sufferer, as was the central character of Charlotte Perkins Gilman's nineteenth-century classic, The Yellow Wallpaper, and many of those people who in previous years went into a mysterious 'decline' and were wont to be labelled as having depressive or other psychiatric illnesses may have been CFS sufferers.

So what is ME, or CFS? It is, as the term CFS states, a syndrome, which is a disease defined not by its underlying pathology, which is still not fully elucidated, but by its clinical features. These include :

  • generalised or localised muscle fatigue after minimum exertion, with prolonged recovery time,
  • neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal,
  • variable involvement of cardiac and other bodily systems,
  • an extending relapsing course with a tendency to chronicity,
  • marked variability of symptoms both within and between episodes. (Ramsey and Dowsett, 1992)

In recent years, there has been increasing acceptance by doctors that ME/CFS is a genuine illness, though differences still exist about the nature of the disease and its underlying cause. Since, though, the illness is a syndrome, defined by its clinical features and not by its underlying cause, it is highly possible that in fact it has multiple causes. The turning point in medical attitudes in this country was the establishment, with the backing of the Department of Health, of the National Task Force on Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome/Myalgic Encephalomyelitis in 1992, though in fact there had been much educational work undertaken, and growing understanding by doctors of the illness, in preceding years. The Task Force was co-ordinated by the CFS charity Westcare in Bristol, and was an eminent body of medical opinion in which all relevant medical specialities were represented. Its report, which was published in 1994, concluded, among other things, that :-

  • these syndromes are real. They pose a significant health problem both to society and to affected individuals and this problem needs to be addressed
  • there is currently widespread ignorance and mismanagement of chronic fatigue syndromes. Patients often encounter lack of support from doctors and other professionals, from educational authorities and from society
  • clinical experience suggests that early appropriate management can prevent or reduce long-term disability in many cases
  • chronic fatigue syndromes do not fit neatly into the conventional view that disease is either "physical" or "psychological". The holistic concept of disease as a disorder of the whole person, body, mind and spirit provides a better model
  • the chronic fatigue syndromes cover a spectrum of disease; fatigue, or fatigability with prolonged recovery time, is the key feature
  • the aetiology of the chronic fatigue syndromes is complex and there is evidence that cases are not all the same; the triggering event is commonly an infection, particularly with a virus, but other factors may perpetuate the disease
  • patients presenting with chronic fatigue syndromes should be assessed using a biopsychosocial (holistic) approach
  • treatment is founded on the basic principle that applies to any disease state, namely that the human body has an innate tendency to heal itself and everything possible should be done to facilitate this process.

The Task Force further pointed out that, while fatigue was a very common symptom, the prevalence of CFS/ME in the population was probably around 1–2 per thousand, or between sixty thousand and one hundred and twenty thousand in the UK population. Epidemiological studies around the world have produced widely differing results in terms of the incidence and prevalence of the syndrome. Thus research studies have reported rates of incidence (i.e. new cases per year) from 4 per 100,000 up to 3,000 per 100,000. This is an enormous variation, and there are four main reasons for it. Firstly, the populations studied may be very different. Some may have experienced epidemic outbreaks, while others may differ in terms of their genetic susceptibility to the disease. Secondly, there may be semantic difference, in that in the past there has been no clear agreement on a case definition for the syndromes. Thirdly, different studies have used different methodologies, which makes comparisons difficult, and fourthly the disease itself is clearly very heterogeneous in its causation.Epidemic outbreaks of CFS/ME have been reported in the medical literature for many years. Between 1930 and 1990 there was a total of sixty-three such reports, but this is almost certainly an underestimate because there is no obligation to report such outbreaks in medical journals. Table 1 shows the time distribution of these outbreaks. It will be noted that they reached a peak during the 1950s.

In terms of their geographical distribution, roughly equal numbers of outbreaks occurred in North America (30, or 47.6%) and Europe (27, or 42.9%). Four (6.3%) occurred in Australasia, and two in Africa. The relative under-representation of the Third World is noteworthy. It reflects both a lack of scientists to document such outbreaks, and a high prevalence of other fatiguing conditions, many associated with malnutrition and poverty, to mask such outbreaks. Many epidemic outbreaks occur in institutions, and 26 of the 63 came into this category. Mostly, these were in hospitals or schools, but outbreaks in convents and military establishments, among others, have been reported.

TABLE 1
Chronological Distribution of CFS/ME Outbreaks
Decade Number of Outbreaks % of Total
1931-1940 6 9.3
1941-1950 6 9.3
1951-1960 26 40.6
1961-1970 9 14.1
1971-1980 6 9.3
1981-1990 11 17.2

The prognosis of the disease is very variable. Many patients (perhaps one third) recover relatively quickly, but in the remainder the illness may be very prolonged and follow a steadily downhill course. Characteristically, the illness is punctuated by successive remissions and relapses, which make it difficult to assess the effectiveness of treatments. There have, in fact, been very few rigorously controlled trials of treatments, and much of the evidence for or against different approaches is essentially anecdotal. There is general agreement, though, that no specific treatment for CFS/ME exists, and that treatment has therefore to be supportive. Symptom control is very important, and, as the Task Force report stated, 'finding and maintaining the right balance between rest and activity (pacing) seems to be the key to recovery for many patients', and 'appropriate psychological treatments also have a place'.

The Medical Royal Colleges' response to the National Task Force report was to set up their own working group, jointly representing the Royal Colleges of Physicians, Psychiatrists and General Practitioners. The working group's report, published in 1996, agreed with the Task Force as to the importance of the condition, and as to the likely multifactorial nature of the underlying causes. It felt, like the Task Force, that the pathological mechanisms had not been worked out, that many of the research findings regarding, for example, neuroendocrine, muscular or immune system dysfunction, may be effects of the disease rather than related to its cause, and that much more research therefore needed to be done in these areas.

One area where the Royal Colleges' report differed from that of the Task Force was over the question of the scale of the disease. The working group estimated a probable prevalence of the syndrome of around three-quarters of a million in the UK. This is far in excess of other estimates, the consensus view being that there may be around 150,000 cases in this country (though there is in fact little research evidence to support this or any other estimate). The working group's estimate was based on just two pieces of research evidence. One was a case-control study, which is not the way to measure prevalence. The other was a well-constructed and well-executed piece of research, but it is not good science to place excessive reliance on a single study. Much more work needs to be done to determine the public health burden of the disease. This is necessary because it is clear that service provision for patients with CFS/ME throughout the country is very patchy and mostly inadequate, and should be improved.

It is time to translate the growing sympathy in the health professions for CFS/ME patients into a much better deal for patients, irrespective of where they live and their life situations. Child patients, for example, have suffered terribly in the past, because of the impact the illness inevitably has on school attendance, a lack of understanding among teachers and educational psychologists, and a propensity among social workers to attribute the problems to family dysfunction. Lives have thus been blighted by the exercise of social control, when what was needed was humility on the part of professionals, and more empathy and loving care.

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About Dr Derek Pheby

Dr Derek Pheby, Epidemiologist, former member of the Chief Medical Officer’s Working Group on CFS/ME and former trustee of Action for ME is currently Project Coordinator at National CFS/ME Observatory. He may be contacted on derekpheby@btinternet.com

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