Letters to the Editor
Ir. J. Psych. Med.
00 353 1 280 7067
23 August 1999
Dear Editor,
I agree with Wright et al. that some websites on chronic fatigue syndrome (CFS) provide essentially misleading and potentially damaging advice1. Unfortunately, it’s not just patient groups who are guilty of ignoring evidence and basing their views on anecdotal reports. I’ve observed the same phenomenon in medical journals, including the aforementioned article by Wright et al2.
Let me illustrate the problem with two examples from their discussion on CFS. The authors state that "several" people have expressed concern about "clinical advice" which "advocates ‘complete’ bed rest". They support this statement with two references. The first of these is a review from 1989 which criticised a factsheet published by a patient group the previous year. I don’t have a copy of the publication in question but I do know that by the Winter of 1988, the organisation was recommending adequate rest, pacing of activities and "gentle exercise". I know that because it was me who advised them. The Second reference was a short paper written in 1994. Its authors discussed the effects of immobility but did not state that doctors, or anyone else, were actually giving the wrong advice.
So, has any doctor in the past twenty years or so actually advocated "complete rest", total rest or the avoidance of activity as a basic treatment for CFS? If not, how many patients take "excessive rest"? How many spend prolonged periods in bed and why do they continue if it doesn’t help?
Research supports the impression that adults with CFS are more inactive than healthy people, and that they increase the number of rest periods after strenuous exercise, However, the reduction in activity is very limited (up to 30%) and there’s no evidence that most are afraid of activity or that they spend long periods in bed3 4 5. Indeed, one study found that CFS patients were no more inactive than people with multiple sclerosis (who did not develop CFS)6. Since the majority of patients remain ambulant, it follows that the abnormalities in muscle function cannot be ascribed to prolonged bedrest, immobility and disuse. Nor can the latter explain why the more active patients experience the same post-exertional fatigue as those who rest in bed, or why their muscle strength actually decreases after exertion ends7.
Admittedly, children may have completely different activity patterns. However, the authors provided no supportive evidence and if doctors are going to rely on anecdotal reports or conjecture, you can’t blame patients for doing the same!
The second example which shows a lack of objectivity relates to the management of CFS. In their discussion, Wright et al suggested that many patients benefit from cognitive-behavioural programmes even though the evidence is far from clear. For example, studies have shown that antidepressants, CBT and graded exercise help patients whose CFS is complicated by depression and/or maladaptive beliefs. However, the result from trials involving patients who were not depressed or phobically afraid have been disappointing, and there’s no evidence yet that it’s an appropriate, let alone an effective treatment, for every patient with CFS.
Consequently, I would challenge Wright et al’s comment that "most experienced clinicians" encourage graded exercise. They cite 8 references. Two are fairly old reviews, and one is a survey relating to chronic fatigue as well as CFS. Another is a letter on 12 inpatients, only six of whom had CFS. Two made significant improvements which were maintained over a year and four showed "slow but steady progress". That team now advocate paced activity within limits rather than graded exercise8. The remaining references consist of four reports involving a total of 16 children and adolescents. The most detailed described the effects of "active rehabilitation" on 10 patients, including two who would not meet any currently accepted criteria for CFS and six who were depressed. Of the eight with probable CFS, four improved.
It may well be true that many clinicians in Britain recommend graded exercise. However, as far as children are concerned, their advice is not based on the findings from large, open studies, or for that matter, a properly controlled trial.
Finally, may I point out that there’s no evidence that CFS is a single entity with a single cause. There is no evidence either of a single response to CFS, irrational or otherwise, nor is there one shared belief system which perpetuates fatigue. Wright et al’s account of the literature was neither balanced, nor fair. It oversimplified a complicated disorder and in my view, misrepresented the research.
Sadly, they are not the only ones. Many articles written by psychiatrists exaggerate the role of psychopathology, plug disproven theories and perpetuate myths1 2 4 9. Would such bias be acceptable in urology or rheumatology? would most oncologists recommend a treatment based on 22 case histories and two out-of-date reviews? Surely clinical decisions should be based on reliable information, balanced analysis and a fair discussion of the evidence? If we accept lower standards in relation to CFS, how will this aid our understanding of the illness and improve patient care?
The fact is that misinformation disempowers all of us. It should be challenged, irrespective of its source.
Yours faithfully,
Ellen Goudsmit (Dr.)
1. Wright B, Williams C and Partridge I. Management advice for children with chronic fatigue syndrome: a systematic study of information from the Internet. Ir J Psych Med 1999; 16(2): 67-71.
2. Goudsmit EM. Chronic fatigue syndrome. A response to Lynch and Clare. Modern Med Ireland 1999; 29 (7-8) : 67-69.
3. Sisto SA, Tapp WN, LaManca JJ, Ling W, Korn LR et al. Physical activity before and after exercise in women with chronic fatigue syndrome. Q J Med 1998; 91: 465-473.
4. Friedberq F and Jason LA. Understanding Chronic Fatigue Syndrome. Washington: American Psychological Association. 1998.
5. 1999 Reader survey results. The CFIDS Chronicle. 1999 12, 4, 6-9.
6. 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(6): 661—673.
7. Paul L, Wood L, Behan WMH and Maclaren WM. Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. Eur L Neurol 1999; 6: 63-69.
8. Cox DL and Findley LJ. Is chronic fatigue syndrome treatable in an NHS environment? Clinical Rehabilitation 1994; 8: 76-80. Plus personal communication.
9. Goudsmit EM. Under the microscope. Response to Henningsen and Priebe. ME and CFS Capital Selecta Quarterly 1999; 2: 15-19. Available from the British Library Health Care Information Service.
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