Spreading the Word

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Dr Phil Hammond’s latest column in Private Eye is called ‘Trial on Trial’. You may remember he wrote quite a helpful column about ME just recently. This time he writes in response to criticism from a doctor who got in touch to say:

“Every illness has a physical, psychological and social component, and limiting diagnosis or treatment to only one aspect of someone’s illness is likely to lead to a much poorer outcome. This ‘triple diagnosis’ applies to any complaint you care to consider, although obviously in varying proportions. The one exception seems to be CFS/ME, where any suggestion that there might be a psychological or social component leads to criticism. That CBT is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.”

It does become tiresome having to deal with such ‘arguments’ time and time again. Once upon a time it was ‘yuppie flu’ that popped up in every article about ME. Now, at long last, that is slowly fading away. Yet now we have to deal with this endlessly repeated idea that ME patients have an unreasonable and unsubstantiated resistance to any suggestion that there might be a psychological component to our illness. People with cancer are happy enough to go for CBT, we are told. So what’s our objection? Continue reading “Spreading the Word”

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

White In Denial

We’ve had to put up with decades of nonsense about ME in the press but today’s Guardian article by Peter White of the PACE Trial has to be the worst I’ve seen. It wasn’t easy to leave a comment on the article while shaking with anger but I did my best. Here’s what I wrote. I’m pleased to say that many others were making powerful points at he same time.

Following the recent release of data from Peter White’s PACE trial (by order of a Freedom of Information tribunal, £250,000 having been spent in attempting to stop it) PACE has finally been revealed as the travesty of the truth it always has been. Rather than give the appropriate heartfelt apology, however, Prof White continues in denial.

The blog to which he disparagingly refers was written by patients who have used energy they can ill afford to spend in a David-and-Goliath struggle to reveal the truth about this reprehensible study. With the aid of expert statisticians they have not distorted the figures, as Prof White implies. What they have done is to use the newly released data to analyse the results in line with the trial’s original protocol, which White and his fellow authors originally declared they would use but then changed their minds as it didn’t give them the outcomes they wanted. They never gave a satisfactory explanation for this change but it now seems pretty obvious why it happened. The newly reanalysed results show that GET and CBT are of no more use than a placebo. They are worthless for ME/CFS, but White and his associates refuse to admit it as they have built their life’s work on these therapies. Therapies which, moreover, have been shown to be harmful for patients with ME/CFS in numerous surveys. Patients have ended up housebound or bedbound for years on end because of the efforts of White & Co, but still they refuse to admit they have done anything wrong.

This change of protocol was only the tip of the iceberg in terms of the study’s shortcomings. The Criteria used to select subjects for the study included patients with other fatigue conditions; the numerous changes in protocol meant that patients could be ill enough to join the study, deteriorate during it, yet still be classed as ‘recovered’ at the end; objective outcome measures which actually measured patients’ abilities were abandoned in favour of questionnaires; conflicts of interest on the part of the investigators were not disclosed to study participants, the list goes on and on…. In years to come, PACE will be used as an example of how NOT to conduct a research study.

 

P.S. The most complete analysis of the many shortcomings of the PACE trial is by David Tuller. The article, Trial By Error,  is in several parts. There are links to all of them here. If you just read the summary though, at the opening of part one, that tells you a lot.

Door to Freedom Revisited

Following my earlier post about the tenuous argument put forward for the recent PACE Trial Freedom of Information Act refusal, I’ve been digging a bit deeper and I think it is now absolutely clear that the ‘evidence’ cited in the refusal notice totally fails to support QMUL’s case. It also appears that it has been deliberately quoted out of context by QMUL to create a misleading impression.

Just to remind you, here is my summary of the argument used for refusing the request:

“The argument seems to go like this: in spite of the fact that this specific request is not onerous and in spite of the fact that the complainant has not previously made an FOI request, he has been adjudged to be part of a coordinated campaign to discredit PACE (because he has talked to other people about PACE on the internet). Therefore the issue has been judged not on this specific request but on the overall burden of PACE-related FOI requests on QMUL, which are accepted not to be overwhelming but have nevertheless caused ‘disproportionate irritation and stress’ to Prof White and his team and are therefore vexatious. Therefore the request for this important piece of information is refused.”

What got me looking at things more closely was this comment by Chrisb on the Phoenix Rising forum in response to my post:

“Mr Spoonseeker has referred to and dealt with the point about the sheer weight of requests but I think there is another point.

“The Guidance apparently states that “if a public authority has reason to believe that several different requesters are acting in concert as part of a campaign to disrupt the organisation by virtue of the sheer weight of FOIA requests being submitted……”

“This guidance appears to be primarily, and quite reasonably, directed at and applicable to an entirely different type of campaign where the object is to bring about the disruption of the organisation, rather than a bona fide attempt to obtain information. Has any evidence been presented with the purpose of demonstrating that the requesters intent was disruption of the organisation of QMUL rather than obtaining the information which we believe to be the real object of the request?

“Given the Commissioner’s acceptance that this particular request on its own would not impose a significant burden, the onus of proof to establish whether the person was acting in concert with others, whose intent was disruption, ought to be significantly higher.

“In order to show that the request constituted part of a campaign one might expect it to be necessary to adduce evidence of a campaign predating the request. It seems to me that the examples quoted by QMUL probably were made after the request and in response to the initial refusal. Alternatively one might attempt to show a link to subsequent requests, but as I recall it there was no such attempt.”

In actual fact I had attempted to deal with most of this issue in my earlier post as follows: Continue reading “Door to Freedom Revisited”