We expected a lot from this Report. We, ME specialists and patients, looked forward to the recognition of ME as a neurological disorder and distinct entity. We expected a clear statement that ME was not to be confused with the psycho-social fatigue syndrome described by psychiatrists such as Simon Wessely. And with a large number of patient representatives on the Group, we expected realistic advice on psychiatric interventions such as cognitive behaviour therapy (CBT) and graded exercise therapy (GET).
The first thing one notices when one reads the Report is the obvious input from the patients. It describes ME with the delayed ‘fatigue’ and the neurological symptoms, not the form of CFS emphasising tiredness, headaches and other ailments, which can so easily be explained in terms of deconditioning and stress. It also gives a good overview of the difficulties faced by many patients, such as the problems getting a diagnosis and benefits, the lack of expertise and treatment options within the NHS and the virtual absence of respite care. There are separate sections acknowledging the severely affected and the special needs of children and adolescents as well as sensible recommendations relating to health service planning and research. However, the psychiatrists clearly influenced the discussion of the causes, with its speculation about inactivity and illness beliefs, and the dismissal of the evidence linking the condition with ongoing infection, immune dysfunction and muscle disease.
Perhaps the most important flaw is the way the Report dealt the issue of subgroups. Echoing the sentiments of the psychiatrists, it opts for the composite of CFS/ME and the concept of a “a single, albeit diverse, clinical entity”. Apparently, there was “no clear evidence” to allow a formal differentiation between ME and CFS. Well, perhaps if they had consulted with more than one ME specialist, or talked to a psychologist with an interest in stress, the differences between ME and the illness formerly known as a ‘nervous breakdown’ might have been more obvious. In terms of diagnosis, ME is an acute illness which can become chronic, while CFS is a chronic disorder by definition. As for treatment, research has shown that three hours of persuasion to increase activities benefited a large number of patients with CFS (cf Powell et al), but there is no evidence that this also works for people with ME.
One could turn their argument around and ask on what basis they decided that CFS was a clinical entity. Studies have identified some interesting differences between patients depending on whether they fulfilled the 1988 criteria or those devised in 1994. Moreover, I cannot recall any research on patients selected using the Oxford criteria that found the immunological or neurological abnormalities documented in those with CFS as defined in 1988.
In medicine, differences matter. We don’t treat breast cancer in the same way we treat tumours of the bowel or pancreas. We don’t even treat all breast cancers in the same way. . We don’t treat tension headaches in the same way as migraines. But when it comes to CFS, the documented differences are generally ignored. Hence, colleagues saw nothing wrong in testing the efficacy of hydrocortisone replacement therapy in patients with normal cortisol levels, even though there is a subset known to have a deficiency. Another example. CBT and GET are being promoted as a treatment which benefits patients across the board, even though there is no evidence that it benefits patients with signs of immune activation or muscle disease. Or for that matter, infectious or neurological symptoms.
According to the authors of the Report, the issue of subgroups is apparently “a matter of semantics and personal philosophy…” I would have thought it was a matter of precision and common sense*1.
Another flaw relates to the discussion of pacing. Pacing is a means of energy management (Goudsmit 2002) and the alternative to GET. Based on the observations that people with ME tire easily and relapse when overexerting themselves, it is a component of a broad-based programme similar to those devised for people with cancer and MS. One controlled trial found that this approach helped 80% of people with post-infectious fatigue, and the details were in the review of treatments written for the group.
For some reason, the Report chose not to describe the original concept of pacing, with its associated theory or the research evidence indicating its efficacy. Instead they devised their own version, cited a flawed theory and then alluded to an unpublished study showing ‘pacing therapy’ (undefined) was no better than ‘guided support’. There was also a reference to surveys showing that about 90% of patients found pacing to be helpful, but this was almost certainly related to the original version, not the hybrid in the Report.
The BMJ quoted one of the pro-CBT doctors who refused to sign the Report as saying “I wanted something less subjective and more evidence-based”. It then went on to describe pacing “as one of the most contentious issues” (Eaton 2002). The journal returned to the Report later, with a sub-heading claiming that the “conclusions in CMO’s Report are shaped by anecdote not evidence” (Straus 2002). It has a point. In a document where evidence seemingly mattered, (cf the discussion of the classification of ME), it was interesting to see how the authors ignored the best evidence relating to pacing and focused instead on a version lacking both theoretical and experimental support.
After the launch, much was made of the Report’s recognition of CFS/ME as a real illness. In fact, the government and NHS recognised ME as a physical disease as far back as the eighties. We haven’t really progressed since then. Indeed, with the failure to recognise ME, I think we’re going backwards.
One could argue that it was as good on ME as it could have been, given the sole ME specialist with both clinical and research experience was only on an advisory ‘ad hoc’ committee. Also noteworthy is that for a disorder classed under Neurological Diseases by the World Health Organisation (ICD-10: G93.3), there was only one neurologist. He too, was on the ad hoc committee. On the other hand, there were five psychiatrists/therapists, at least one of whom had earlier dismissed ME as a ‘belief system’. And although there was an immunologist on the influential Key Group, there was no one who has studied the virology of ME.
The Report was clearly a political compromise. The minute they refused to consider the existence of likely subgroups, they were destined to return to mind versus body debate. Admittedly, it is possible that CFS can be caused by both psychological and infectious triggers but on the other hand, the failure to differentiate between, say, those who have the characteristics of ME and those who don’t, means this will remain a matter for speculation. The authors hid behind the excuse that there was “no clear scientific evidence”, even though there is none for the opposing view either. High standards of proof also operated when assessing the research on immunological abnormalities, although sadly it was not extended to the discussion of psychiatric interventions, the influence of psychological factors and of course, pacing*2. This suggests a lack of objectivity which helps neither patients nor doctors. It spoilt what is otherwise an interesting and important document.
Ellen Goudsmit PhD
