Caring for patients with chronic fatigue syndrome

Conclusions in CMO's report are shaped by anecdote not evidence

In 1998, the chief medical officer of England and Wales commissioned a working group to advise on best practice guidelines to improve the quality of care and treatment for people with chronic fatigue syndrome/myalgic encephalomyelitis. Now issued, the group's report reflects the good efforts of the scholars, practitioners, patients, and advocates who joined to address this complex matter.1

Given the controversies surrounding chronic fatigue syndrome, it is not surprising that the report admits to broad domains of disagreement among its members. If anything, it is remarkable that most of the original group weathered the undertaking, as there were resignations both among patients who deemed the evolving product insufficiently sympathetic and among academic practitioners who chafed at recommendations untempered by data.

The report identifies the sentinel issues that concern patients and practitioners alike: how one makes the diagnosis of chronic fatigue syndrome; the treatments to consider; and research that remains to be done. Unfortunately, despite more than 2000 relevant papers indexed on PubMed since chronic fatigue syndrome was first named in 1987, the group's conclusions appear more shaped by anecdote than by evidence. In particular, major systematic reviews, including the recent one by Whiting et al, are not cited and do not seem to have significantly informed the guidelines.2

Case definition, and hence estimates of prevalence, are pivotal issues. While there is no universal definition of chronic fatigue syndrome, the widely used ones all require significant fatigue and a set of attendant symptoms for at least six months. 3 4 The least restrictive of these definitions leads to estimates of as many as 200 to 400 cases per 100 000 people, with relatively higher rates among women than men, and among adults than children or adolescents. 5 6 The report argues that these are underestimates and suggests considering individuals in whom fatigue has persisted for only six weeks as incipient cases of chronic fatigue syndrome. Even more remarkable is the proposal to accommodate within the rubric of chronic fatigue syndrome children in whom “fatigue may not be a presenting problem.”1

Three types of treatment modalities are highlighted, with each given equal weight on which to build the therapeutic approach to chronic fatigue syndrome: graded exercise, cognitive behavioural therapy, and pacing. How these disparate methods emerged from the menu of options is symptomatic of irreconcilable perspectives within the group. The seminal studies that established the utility of graded exercise and cognitive behavioural therapy were proofs of concept, confirming that one can apply standard metrics of illness and document clinically meaningful improvement in chronic fatigue syndrome.7^–9 Yet they are specialised modalities and too limited now in their availability for the typical patient. Pacing, based on the sensible notion that a patient with limited physical and cognitive resources should expend them cautiously, however, emerges as a key recommendation without any formal proof, perhaps because anyone can advise it and undertake it. While pacing may prove beneficial, one must be concerned that encouraging patients to avoid incremental increases in activity for fear that their symptoms will be aggravated may condemn them to stay ill longer.

As to the capacity of medical institutions to afford full service needs for people with chronic fatigue syndrome, the limitations are predictably the same as for those with other chronic diseases. Resource use needs to be based on competing public health needs, and above all on evidence as to what is most effective. In the United Kingdom, the National Institute of Clinical Excellence is one body to which this and related reports could be referred for further opinion.

The report does not articulate a detailed research plan. Emphases are placed on epidemiological studies and more clinical trials. There is certainly a need to understand better the range of chronic fatigue syndrome in children and adolescents and to determine whether severe neurological problems can be documented, as claimed, to represent features of chronic fatigue syndrome.

What the report expresses well is that core issues for chronic fatigue syndrome are those of belief and trust, in that patients are not believed and that medical institutions are not trusted to serve them adequately. One senses the need to testify repeatedly in the report that chronic fatigue syndrome “is a genuine illness.” While there will always be those who doubt the evidence, as there are those who doubt HIV is the cause of AIDS, the time has come to move on. Whatever one presumes chronic fatigue syndrome to be, people suffer with it and because of it. A report of a joint working group of the royal colleges made that point abundantly clear in 1996.10

Too often we fail to appreciate that despite our inclinations or abilities to comfort patients, they will seek other solutions in the healthcare marketplace. This underlies the enormous popularity of complementary and alternative medicine. While there is little evidence that these approaches benefit people with chronic fatigue syndrome,2 they are accessible and are best addressed, like the patients who seek them, through serious investigation.11