Yes, but do they have ME?

Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics (at BMJ Open)

This morning several news sources reported that a study had been published by BMJ Open (the open-access section of the British Medical Journal’s website) which reported that around 1% of children (that is, 28 out of a sample of 2,855) were missing more than 20% of school over a six-week period due to what they called CFS/ME (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis — interestingly, they do not call it Encephalopathy). Reports included this one from the BBC, this one from the Daily Mail (which gets points for featuring a genuinely sick-looking child, not a model pretending to be a bit tired), this one from the Telegraph, this one from the local Bath Chronicle and this one from the Guardian. The Guardian’s has a case study and the BBC’s report has an interview with Mary-Jane Willows of AYME, and a teenage girl sufferer.

It is, of course, not news that ME is a major cause of absence from schools: a study conducted by Jane Colby (now of the Tymes Trust) and Dr Betty Dowsett, a neurologist who is a major (now sadly retired) expert on ME, reported that the single biggest cause of long-term sickness absence in secondary schools was indeed ME (note: although they use the term ME/CFS in the article, both authors are known for their strong interest in enteroviral ME, not generalised CFS). They estimate the prevalence of the illness as being 70/100,000 among pupils (that is 0.07%) and 500/100,000 among staff (0.5%) — far less than the 1% being alleged in the recent Bath report. Mary-Jane Willows suggested in the BBC’s report that even that figure is likely to be a minimum. Of course, so much of the bad research on “ME/CFS” in recent years has used definitions of the illness which inflate the number of sufferers — usually by a factor of about five. To suggest that 1% of the total adolescent population has ME is simply staggering.

Significantly, the Telegraph found a psychiatrist (Matthew Hotopf), a professor of psychological medicine (Peter White) and a professor of Cognitive behavioural Psychotherapy (Trudie Chalder) to comment on this report, yet nobody involved in biomedical research into ME or who treats ME from a purely physical or neurological standpoint. The report claims that there is “some evidence that particular treatments (graded exercise therapy and cognitive–behavioural therapy) are moderately effective in children, while the recently reported PACE trial provided strong evidence that these treatments are moderately effective in adults”; the BBC quotes the report’s claim that of 23 who were diagnosed with “CFS/ME” through a school clinic, 19 chose to have treatment (CBT or GET) and all saw a substantial improvement. However, there were actually 28 cases identified in the recent study, and it is not suggested that these 23 were part of the Bath sample. Why some of them did not continue using the “CFS” service is not made clear: perhaps they found it made their condition worse.

Some will welcome any publicity for ME that says “yes, ME is a big public health concern after all”, but this contribution is from a group which favours psychological approaches to ME and talk and exercise as a cure. The psychiatrist quoted by the Telegraph, Prof Hotopf, mentioned depression as one of the major causes of fatigue; it is, in fact, one of the conditions that can result in a misdiagnosis of CFS. When the PACE trial was published last year, they did not include the severely affected and the resulting publicity entirely ommitted them from consideration, despite the plethora of reports that GET has in fact made some patients’ conditions worse, sometimes permanently. It underlines the importance of defining ME properly so that treatments such as GET which may benefit some fatigue patients are not tried on people it can seriously harm. It is important that this distinction is clarified in response to this study and the publicity surrounding it.

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