Two new medical articles about ME

Guest post by Rob Shaw

This week saw two articles released about ME. One was about fairly poor piece of research that got lots of press attention; the other was a draft National Institutes for Health (NIH) report in the US.

The first one, Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial in The Lancet Psychiatry reported on an additional analysis of data from a trial called PACE, and concluded that "Our main finding was that fear avoidance beliefs were the strongest mediator for both CBT and GET", which in plain English means they think that one of the treatments tested - Graded Exercise Treatment - was less effective than it could have been because some participants were afraid that exercise would make their condition worse.

This spawned several very naively written articles in the media such as:

1. The Independent: Chronic fatigue syndrome sufferers ‘can benefit from exercise’ 
2. The Daily Mail: Chronic fatigue victims ‘suffer fear of exercise’: Patients are anxious activities such as walking could aggravate the condition
3. The Daily Telegraph: ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers
4. The BBC: Exercise can help ME, researchers say

Following the publication, there have been some very good personal accounts of the impact of exercise on ME, this one in The Guardian is particularly good. However, few have commented specifically on the methodology, although most of these reflect issues with the original trial. One good summary of the issues is this one from ME Research:

"[we already know] that psychosocial interventions can help some moderately affected ME/ CFS patients manage or cope with their symptoms, but otherwise have only an adjunctive role in the treatment of the illness. In fact, the situation is exactly the same as in other chronic illnesses, such as multiple sclerosis, where non-specific psychological approaches can help some patients to manage symptoms, but are no substitute for the whole clinical and therapeutic armoury required to treat and (ultimately) cure the underlying disease."

The NIH draft report, I think begins to gets at one of the fundamental issues that is inhibiting all research into ME: there is no clinical diagnostic test so (a) the subject group probably includes people with ME and other conditions with similar symptoms (or ME might be 2 or more similar conditions) and (b) measures of improvement must rely on patients' reports of symptoms rather than improvement in a clinical test result. For me, one sentence sums it up "Innovative biomedical research is urgently needed to identify risk and therapeutic targets."

The recommendations made in the draft report are far reaching and once the final report is released in a few weeks time, more might be known in terms of what may be ultimately be done to achieve its proposed strategies. The NIH's reports could have far reaching consequences since the NIH directs research budget of around £30bn a year, more than 25x greater than the Medical Research Council in the UK.

Finally, a mention for The Economist, who unusually produce a mediocre summary of The Lancet article with the simplistic title "Fear to tread". That said, I think their conclusion (below) is spot on, and as the NIH say, applies to most diseases (there is evidence in many cancers, for example):

"That both [psychological and physiological mechanisms] are involved is hardly surprising. The link between a healthy mind and a healthy body (and vice versa) has been known since classical times. That, though, is by no means the same as saying something is all in the mind."