Swings amongst the Roundabouts

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Looking at the Evidence

As you may know, a few days ago the Journal of Health Psychology published a very important special issue critiquing in depth the controversial, deeply flawed PACE Trial, a study which purported to provide evidence for the use of graded exercise and a very specific type of CBT in the treatment of ME (myalgic encephalomyelitis, also known – misleadingly – as chronic fatigue syndrome or CFS). Congratulations to the journal’s editor Prof David F Marks for taking the trouble to inform himself about the true situation regarding ME. He is one of very few scientists and health professionals who despite having no personal or pre-existing professional interest in the condition has made the effort to look at the facts and realise that – unlikely as it may seem to many – the PACE Trial and similar ‘research’ into ME by those with a fixed biopsychosocial mindset really is every bit as flawed, misleading and potentially damaging as patients have been claiming for years. Dr David Tuller, Prof James Coyne, and Prof Jonathan Edwards are other rare free thinkers who have not been afraid to get informed and challenge the status quo – or to put it another way, to point out that the emperor is naked because that is what he is.

By contrast, those who persist in defending PACE give the impression that they have simply taken the word of the PACE investigators rather than study the actual evidence. Prof Malcolm Macleod, who was trotted out by the Science Media Centre as an ‘expert’ in response to the special issue, seemed only aware of one of PACE’s many flaws and seemed to base his defence of the study chiefly on the ‘doubtful provenance’ of some of its critics. It is another example of people being judged on the basis of who they are, rather than what they say or where the truth lies.

As for Prof George Davey Smith, who left the JHP’s editorial board in protest at the PACE-related special issue, he seemed to positively gloat about his ignorance of ME at last year’s CMRC conference, this in spite of his involvement with the much vaunted though controversial MEGA study, and even referred to it as CSF rather than CFS, apparently mixing up chronic fatigue syndrome with cerebrospinal fluid.

Speaking on Twitter, David F Marks described his disappointment that George Davey Smith did not ‘offer a pro-PACE commentary instead of leaving in a huff’. He (Marks) has offered to debate with PACE supporters in a public forum at any time. I don’t suppose he’ll get any takers. That would put them to the trouble of actually sitting down and informing themselves of the true situation.

Marks, meanwhile, has studied the facts and has drawn his own conclusion. He says: ‘“The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.’ To which I would add: ‘also an exercise to try to protect the reputations of a small number of health professionals who have built their illustrious careers on the back of an unproven ‘biopsychosocial hypothesis’.

Meanwhile the proponents of PACE continue to take the cream of the research money here in the UK, so inhibiting much-needed biomedical progress; unsuspecting patients are given potentially damaging courses of graded exercise; and the number of parents threatened with ME-related child custody proceedings appears to be spiralling upwards, all this fuelled by the unproven biopsychosocial hypothesis.

As The Times article reported with great relish, James Coyne allegedly called the departing Davey-Smith ‘a disgusting old fart neoliberal hypocrite’. This may seem a little harsh but if language like that helps to get the truth about PACE in the newspapers, then so be it as far as I am concerned. And in view of the human suffering which underlies the farce that is PACE, perhaps such language is restrained.

Note: David Tuller’s response to the Science Media Centre’s ‘expert comments’ on the JHP special issue is here.

None The Wiser…

Does Esther Crawley’s latest research really tell us anything about the prevalence of pediatric CFS/ME?

 

After a quiet time over the holidays and into the new year, ME/CFS has been back in the news again. This time the coverage has in many ways been rather helpful. Dr Mark Porter, writing in The Times painted quite an accurate portrait of the condition: usually starting after an infection; involving numerous symptoms rather than only fatigue; the fatigue itself “persistent and recurrent”; and “exacerbated by physical or mental exertion”. There was even a description (though not by name) of the all-important post-exertional malaise. Pacing was also well described: “some of the strategies are counter-intuitive”, “it is important to avoid the boom-and-bust cycle”, only the exhortation to avoid daytime sleep seemed to me to be off the mark: in some situations this is a useful strategy to restore natural rhythm but in my experience as a patient it’s not always feasible or desirable. Nevertheless I liked Dr Porter’s perspective on the possible psychological repercussions of having ME: “feeling awful for months on end will dampen the spirits of the hardiest person” and severe ME at least gets a mention: “when severe it can leave victims housebound and often bedridden (the worst cases require hospital treatment)”. Not that the hospital is likely to have a clue what to do about it but at least there is some acknowledgement of severity.

The piece on the BBC News website focused more on the new study from the University of Bristol which served as the trigger for this latest splurge of publicity. Chronic Fatigue Syndrome at Age 16 Years claimed that the prevalence of pediatric CFS was 1.9% in 16-year-olds, higher than previously thought. The BBC article rounded this up to 1 in 50 and contrasted it with the 1 in 1000 (it said) who are actually diagnosed. Hmm.

The study also claimed that CFS affected almost twice as many girls as boys at age 16 and was more likely to affect children from disadvantaged backgrounds. According to the article, the study authors said this dispelled the commonly held view that CFS/ME was a “middle-class” illness, or “yuppie flu”.

I think I would dispute the fact that this is a widely held view any more (except perhaps among journalists), most of the general population having either forgotten about yuppies or being too young to have heard of them at all. But I suppose it is a useful enough finding – if it can be trusted, that is, but more of that in a moment… Continue reading “None The Wiser…”