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.

More Voices

Many patients and carers left additional comments for Professor Holgate of MEGA when they signed our recent letter. I wasn’t able to carry these over when I transferred the post to its permanent home, so I’m reprinting some of them here.  Sorry I haven’t included them all but I am grateful for all your comments and signatures nevertheless. I shall link to this post when I send the follow-up letter to Prof Holgate (which I hope till be tomorrow). I will post the follow-up letter here on the blog as well.

Here are the comments: Continue reading “More Voices”

Barefaced

Over the past 48 hours, many patients have been expressing concern about the involvement of Prof Peter White in the proposed MEGA biomedical ‘big data’ study of ME/CFS. It seems extraordinary that someone who believes in the simplistic ‘fear-avoidance’ model of ME/CFS should even wish to be involved in this study. Of what relevance is psychiatry to genomics?

Then, yesterday, came a timely reminder of why we can’t allow Prof White anywhere near this project. His Guardian article in defence of PACE was an extraordinary illustration of a) his refusal to accept the truth about his fatally flawed research and b) his determination to say whatever it takes to try to defend the trial, however much deceit this may involve.

It has long been obvious to those who have studied PACE that the trial involved blatant trickery, juggling outcome measures to produce the results they wanted, but these deceits were not always obvious to those unschooled in statistics and/or without the time to sit down and read through the details. Just recently, however, as the whole PACE edifice comes closer to collapse, the lies seem to be getting both more desperate and more transparent. Yesterday’s article contains a real transparent whopper, but I’ll work through the piece in order, saving the whopper for last:

  • White dismissively mentions an earlier post which claimed that sexism was part of the cause of ME patients’ mistreatment. He must surely be aware, however, that McEvedy and Beard, the two psychiatrists who first claimed ME to be a ‘hysterical’ condition cited ‘the high attack rate in females compared with males’ as part of their argument. Sexism therefore certainly played a part in the emergence of the PACE authors’ view of the condition.
  • White goes on to make several mentions of ‘fear’ among patients. “The idea of exercise was scary for some patients” he writes, though he seems to have forgotten his own 2005 study which demonstrated that “CFS patients without a comorbid psychiatric disorder do not have an exercise phobia”.
  • White speaks disparagingly of the newspaper articles which followed the various PACE announcements, accepting that headlines such as “just get out and exercise, say scientists” were harmful and misleading. At the time, however, he and his fellow PACE authors did little or nothing to try to correct such coverage. Furthermore, these very articles were written by journalists who had been briefed by the Science Media Centre, the shadowy organisation purporting to support “balance” in science reporting, which in turn was briefed by the PACE authors themselves and their associates.
  • White continues to quote his figure of 22% for ‘recovery’ in patients receiving GET or CBT, making clear that by ‘recovery’ he really means ‘remission’. (This was another sleight of hand. White and his fellow authors failed to correct media reports which – not unreasonably – assumed that ‘recovery’ meant ‘recovery’). Yet those of us who have been following the PACE saga know that the 22% result no longer stands. Alem Matthees, Tom Kindlon and their colleagues have shown in their reanalysis that the true result is only 7% for CBT and 4% for GET, a statistically insignificant outcome, being scarcely above the 3% figure for standard medical care which everyone on the trial received anyway (including those on CBT and GET.)

This leads on to the whopper, for White gives the impression in the Guardian article that Matthees and his team got their result by playing around with the figures. The implication is that this was a fiddle. In actual fact, of course, Matthees used the original trial protocol which White and his colleagues had said they would use but changed when (we can only assume) it failed to give them the results they wanted. Yes, there was fiddling going on, but it wasn’t Matthees that was doing it.

White must know that Matthees was using the original protocol. This was explicitly why Matthees requested the data – because White and his team had protested they didn’t have time to do the calculations themselves. White must have sat through – or at least paid close attention to – the Freedom of Information Tribunal which issued the order to release the data. It can’t have escaped his attention that it had been requested specifically to reanalyse the figures according to the PACE authors’ own original protocol. Yet in the Guardian article, White gave the impression that Matthees and his team had simply been making random tweaks to fiddle the figures. The only possible explanation for why he wrote it like that was to deliberately mislead Guardian readers. He must have known better. He did know better. He was telling a barefaced lie to try to save his reputation.

I’m sorry. A man who will do something like that is not to be trusted. It is totally unreasonable for the ME organisations who are supposed to be protecting patients’ interests to think it is OK for him to be involved in an important piece of biomedical research into this illness. Why they even talk to him any longer is beyond me. It is high time we move on from PACE – and move on from Peter White. We’re really suffering here. We deserve better.

 Note: I’ve been asked to include details of ‘unsigning’ in case you previously signed the MEGA petition and wish to un-sign pending further information about the study. I covered it here