An analysis of the conflict surrounding ME.
The following article was written for an essay competition organised by the Lancet. It was then offered to several British medical journals who rejected it. The reasons included the following:
We reprint the article here so you can make up your own mind.
If there was a Eurovision heart sink contest, my guess is that the British medical profession would award their twelve points to myalgic encephalomyelitis (ME). Renamed chronic fatigue syndrome (CFS), this condition has frustrated and irritated doctors since the media discovered it in 1986. However, the story about ME is not simply about belligerent patients, reluctant to accept a psychological cause. In my view, the growing antagonism between doctors and patients is also the result of misinformation and confusion, particularly in the medical press. In the following article, I will present my analysis of the events which not only changed our attitudes but also alienated many of us from our patients.
The problems began when the Americans adopted the name CFS1. By focusing on such a ubiquitous complaint, they not only increased the population covered, but also caused scientists to overlook important clues2, 3. In Britain, the change of nomenclature directed attention away from 'pure' ME and towards patients with psychiatric problems, strong wills and highly maladaptive beliefs4. Sadly, when the patients observed that these descriptions only applied to a subgroup, they found few who were prepared to listen and consider that they might have a point.
The scepticism was most obvious in the medical journals5. Accounts of the illness were rarely balanced or fair and clinicians challenging the psycho-social explanation of CFS were often dismissed as simplistic, biased or naive6. For many editors, ME was little more than 'fatigue with attitude', and as long as there was no proof "beyond reasonable doubt" that it had "an organic cause", patients were not to be believed7.
Some physicians found it difficult to contain their growing hostility. As one doctor wrote in the Times, those who viewed ME as a distinct entity were not "earnest scientists or doctors who have spent years peering down microscopes, walking the wards and studying the statistics..."8 ME may have been added to the WHO's International Classification of Diseases, but to this author, it was a diagnosis only made by quacks.
The introduction of the new term also created doubts about the presentation and severity of the disorder. While the clinical picture of ME had focused on exhaustion, fatiguability and a flu-like malaise, these symptoms were rarely associated with CFS. Indeed, within months, the medical media had effectively managed to transform one of the most disabling conditions into a much more benign sounding entity featuring tiredness, worry, aches and pains9. One writer who felt that CFS was merely "an escape route for the middle classes", stated that the claims to be severely debilitated were simply untrue10. Another was equally dismissive, arguing that CFS primarily affected women "who expect to feel 100 per cent, 100 per cent of the time"11.
All these articles therefore created the impression that this condition was not only self-inflicted but that patients were exaggerating their distress. Of course, specialists with a different view submitted more sympathetic accounts of the illness but they were invariably relegated to the letters page and ignored.
After seven years of such negative publicity, research began to document some of its effects12, 13. Particularly noticeable was the reaction of the sufferers, many of whom felt rejected by orthodox medicine and reported widespread misunderstanding and disbelief14, 15.
It would be wrong, however, to blame this situation solely on the prejudice and intolerance among writers and editors. In fact, there was a second problem which was adding to the confusion about ME and CFS.
Following the change of terminology, most physicians clearly assumed that CFS was to replace ME: that it was a synonym referring to the same disease16. However, research has demonstrated that the currently used criteria for CFS are selecting a much more heterogeneous population, including patients with burn-out, primary sleep disorders, depression and a host of other conditions characterised by fatigue14. From a psychological perspective, some of the patients reported the maladaptive beliefs and lifestyles documented by the psychiatrists, but others did not2, 14.
In 1994, the joint CDC/NIH task force on CFS advised researchers to study of more homogeneous groups17. To date, this change of focus has resulted in some interesting findings, including evidence of persistent infection, once thought to be the cause of ME18, 19. Moreover, when acute and gradual-onset cases were compared, the former were found to have more cognitive defects as well as lower rates of psychiatric illness and a better outcome16, 19.
In Britain, the reported differences within the CFS population were generally ignored, or dismissed as insignificant. Indeed, the Royal Colleges Report limited its discussion of the evidence to a sentence or two, speculating that the results might have been due to inactivity or problems with sleep16. They also rejected the concept of ME as a clinical entity, adding that continued use of the term would "mislead patients into believing that they have a serious and specific pathological process affecting their muscles and brain".
This would have been a perfectly fair point were it not for the mounting evidence that such a subgroup exists. Space does not permit me to discuss the findings in detail, but there have been a number of reports of pathology in the muscle and brain, particularly in patients with symptoms consistent with ME or post-viral fatigue14, 21.
In terms of symptoms, there are two which support the existence of an entity similar to ME. Firstly, research has identified a subset of CFS patients with significant cognitive impairment. The reported deficits are specific rather than global, unrelated to depression22, 23 but similar to the abnormalities previously described in connection with ME24.
Secondly, several studies have documented marked fluctuations in the symptoms of strictly-defined CFS25. Alongside the phenomenon of post-exertional malaise, this is also one of the main characteristics of ME26. Admittedly, none of these observations prove that ME is a subgroup of CFS, let alone an entity with "serious" pathological origins. However, to dismiss the research as the Royal Colleges did seems rather premature.
Do the differences really matter? Well, possibly. Until research provides some clarification, it may not be valid to generalise from broadly-defined samples to subgroups like ME. Take, for instance, the epidemiological data on fatigue. The Royal Colleges Report claimed that CFS is very common, affecting up to 2.6% of the population in the UK. However, other studies have shown that only 1 per 1000 fulfil the more stringent criteria for ME and what used to be known as post-viral fatigue27. This discrepancy does not reflect any differences in severity or the number of symptoms. As noted above, what characterises ME is not only what one has - e.g. fatigue - but also when one has it - i.e. following minor exertion. While the presence of post-exertional malaise could therefore help to differentiate ME from several other disorders, most British researchers have not yet attempted to reduce the heterogeneity of their population, and the Royal Colleges Report did not discuss the advantages of doing so.
Another consequence of ignoring the differences is that doctors may be more prepared to accept simple explanations focusing on a single cause. Consider the much cited psycho-social theory of CFS. This identifies two main factors responsible for the perpetuation of the illness: mistaken beliefs about the aetiology and the inactivity due to a phobic fear of fatigue4, 14.
Most practitioners will already be familiar with the arguments supporting this view. However, the limited coverage of the less persuasive evidence5 means that a number of findings have not received the attention they deserve. For instance, recent research suggests that at least some CFS patients may well be correct when they attribute their disability to ongoing disease18. Secondly, when researchers actually measured activity levels, CFS patients were found to be no different from people with mild multiple sclerosis28. Thirdly, if a lack of exercise was a major cause of unexplained chronic fatigue, CFS would be much more common than it is. Fourthly, deconditioning may be a highly plausible explanation for tiredness but it's hard to understand how it might be responsible for other common symptoms such as cognitive impairment, visual disturbances and intolerance to alcohol14.
However, what concerns most about the psycho-social theory is the assumption that everyone with CFS reacts in the same uniform way. Since when was life that simple? In terms of the research, we know that some patients ascribe their ill-health to ongoing disease, but that many do not29. Similarly, some reject a psycho-social explanation but others do not14. And while a few take to their beds for months on end, most remain ambulant and function reasonably well14, 30. In short, when patients and scientists criticise this theory, it is probably not because it is psychiatric but because it is wrong!
Finally, it is important to consider the heterogeneity of CFS in relation to treatment. For example, research has shown that where there is evidence of ongoing infection, many patients may benefit from anti-viral drugs and/or the advice to balance activity and rest14, 18. On the other hand, if patients report significant depression and unrealistic views, programmes comprising cognitive-behaviour therapy (CBT) and planned exercise are clearly the treatment of choice2. A sound diet low in sugar and fat is also worth trying but challenging physical attributions is probably a waste of time. The majority of studies suggest that these are not related to outcome and that most patients tend to improve, irrespective of their beliefs31 32.
In Britain, CFS is an umbrella term covering a multitude of ills. It's also a dustbin diagnosis; a dumping ground for all those with unexplained fatigue. And it's a short-cut, an end point in the diagnostic process rather than an intermediate stage. If it is to become a valid diagnosis, then our approach to the problem will have to change. We might start by amending the name to chronic fatigue syndromes, thereby acknowledging the latest research. Other priorities might include the delineation of the subgroups, the development of more precise criteria and the standardisation of the diagnostic procedure around the world2.
The time has also come to challenge the myths surrounding CFS, not least the stereotype of the gullible 'wimp', prejudiced against psychiatry and afraid of 'fatigue'. Such generalisations are not only unwarranted, but also stigmatising and a major source of distress.
Finally, we cannot hope to increase our understanding of CFS if one group of professionals excludes those with a different view from the debate. The apparent consensus in the Royal Colleges Report was a scam. Experts critical of the psychiatric research weren't invited to present their evidence and dissenting voices were not heard. Thus one school of thought ended up analysing all opposing views and produced a document neither authoritative nor up-to-date.
Of course, people are entitled to their opinion. The problem in Britain is that specialists like myself are effectively barred from the mainstream journals, with the exception of the letters page. Consequently, most practitioners don't know about the subgroups and may be giving their patients out-dated and inappropriate advice.
Fortunately, this kind of editorial bias rarely lasts. We should understand it, learn from it and move on. The editors concerned might start by devoting a leader to the non-psychiatric aspects of fatigue. They should also acknowledge the complexity of CFS and encourage a more critical evaluation of psychiatric research2. A fair and balanced presentation of the literature is not a luxury to be indulged when space permits. It's essential to keep practitioners aware of new developments and to guide research. More importantly, it's the prerequisite for a constructive debate and the antidote for the conflict and distrust which has undermined too many doctor-patient relationships for the past decade.
Copyright EM. Goudsmit 1998.
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1. Holmes GP, Kaplan JE, Gantz NM, Komaroff AL, Schonberger LB, Straus SE et al. Chronic fatigue syndrome: a working case definition. Ann Int Med 1988; 108: 387-389.
2. Jason LA, Richman JA, Friedberg F, Wagner L, Taylor R and Jordan KM. Politics, science, and the emergence of a new disease. The case of chronic fatigue syndrome. Amer Psychol 1997 52; 9: 973-983.
3. Hyde B. The definitions of ME/CFS, a review. In Hyde BM, Goldstein J and Levine P, editors. The clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome. Ottawa: The Nightingale Research Foundation. 1992: 8-18.
4. Surawy C, Hackmann A, Hawton K and Sharpe M. Chronic fatigue syndrome: a cognitive approach. Beh Res Ther 1995; 33: 535-544.
5. Read C. ME/PVFS and the press. A report for Action for ME on the coverage of myalgic encephalomyelitis and post viral fatigue syndrome in the medical press. Wells: Action for ME. 1993.
6. Lawrie SM and Pelosi AJ. Chronic fatigue syndrome and myalgic encephalomyelitis. Br Med J 1994; 309: 275.
7. Delamothe T. Look at ME. Br Med J 1994; 308: 798.
8. Stuttaford T. An illness that starts in the mind. The Times 1999 Sep 14; 16.
9. David A and Wessely S. Chronic fatigue, ME and ICD-10. Lancet 1993; 342: 1247-1248.
10. Dalrymple T. Myalgic encephalomyelitis - my eye. Medical Monitor 1992; 5: 28.
11. Welsby P. Counselling and care of chronic fatigue syndrome. Pulse 1990 Nov 10; 79-80.
12. Cooper, L. Myalgic encephalomyelitis and the medical encounter. Soc Health Illness 1997; 19: 186-207.
13. Scott S, Deary I and Pelosi AJ. General practitioners' attitudes to patients with a self diagnosis of myalgic encephalomyelitis. BMJ 1995; 310: 508.
14. Goudsmit EM. The psychological aspects and management of chronic fatigue syndrome. [Thesis]. Uxbridge: Brunel University, 1996.
15. Woodward R.V, Broom DH and Legge DG. Diagnosis in chronic illness: disabling or enabling - the case of chronic fatigue syndrome. J R Soc Med 1995; 88: 325-329.
16. Report of a committee of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. Chronic fatigue syndrome. London: RCP; 1996.
17. Christodoulou C, DeLuca J, Johnson SK, Lange G and Natelson BH. Efforts to reduce heterogeneity in chronic fatigue syndrome research. In Yehuda S and Mostofsky DI, editors. Chronic Fatigue Syndrome. New York: Plenum Press; 1997: 73-94.
18. Lerner AM, Zervos M, Dworkin HJ, Chang CH, Fitzgerald T, Goldstein J et al. New cardiomyopathy: pilot study of intravenous ganciclovir in a subset of the chronic fatigue syndrome. Inf Dis Clin Pract 1997; 6: 110-117.
19. Bennett AL, Chao CC, Hu S, Buchwald D, Fagioli LR, Schur PH, Peterson PK and Komaroff AL. Elevation of bioactive transforming growth factor-b in serum from patients with chronic fatigue syndrome. J Clin Immun 1997; 17: 160-166.
20. Levine PH., Snow PG, Ranum BA, Paul C and Holmes MJ. Epidemic neuromyasthenia and chronic fatigue syndrome in West Otago, New Zealand: a 10-year follow-up. Arch Int Med 1997; 157: 750-754.
21. McGarry F. Gow J and Behan PO. Enterovirus in the chronic fatigue syndrome. Ann Int Med 1994; 120: 972-973.
22. Sandman CA, Barron JL, Nackoul K, Goldstein J and Fidler F. Memory deficits associated with chronic fatigue immune dysfunction syndrome. Biol Psychiat 1993; 33: 618-623.
23. Marcel B, Komaroff AL, Fagioli LR, Kornish RJ and Albert MS. Cognitive deficits in patients with chronic fatigue syndrome. Biol Psychiat 1996; 40: 535-541.
24. Smith AP. Chronic fatigue syndrome and performance. In Smith AP and Jones D, editors. Handbook of Human Performance, Vol. 2. London: Academic Press; 1992: 261-278.
25. Anderson JS and Ferrans CE. The quality of life of persons with chronic fatigue syndrome. J Nerv Ment Dis 1997; 185: 359-367.
26. Dowsett EG and Welsby PD. Conversation piece. Postgrad Med J 1992; 68: 63-65.
27. Ho-Yen DO and McNamara I. General practitioners' experience of the chronic fatigue syndrome. Br J Gen Pract 1991; 41: 324-326.
28. Vercoulen JHMM, Bazelmans E, Swanink CMA, Fennis JFM, Galama JMD, Jongen PJH et al. Physical activity in chronic fatigue syndrome: assessment and its role in fatigue. J Psychiatr Res 1997; 31: 661-673.
29. Ware NC and Kleinman A. Culture and somatic experience: the social course of illness in neurasthenia and chronic fatigue syndrome. Psychol Med 1992; 54: 546-560.
30. Packer TL, Foster DM and Brouwer B. Fatigue and activity patterns of people with chronic fatigue syndrome. Occup Ther J Res 1997; 17: 186-199.
31 Ray C, Jefferies S and Weir WRC. Coping and other predictors of outcome in chronic fatigue syndrome: A 1-year follow-up. J Psychosom Res 1997; 43: 405-415.
32. Lawrie SM, Manders DN, Geddes JR and Pelosi AJ. A population-based incidence study of chronic fatigue. Psychol Med 1997; 27: 343-353.