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.
spoonseekerdotcom 
Surely the patient community now has enough evidence to seek an injunction against White and colleagues to make them cease their long campaign of harassment and libel against us?
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An interesting point. It may be so. I’ll put it in a tweet and see if anyone’s interested.
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Apparently ‘This article is now closed for comments’. Which is a shame because my comment/question would have been along these lines:
‘I’m fairly new to this controversial topic. However my understanding is that if the design of a trial (such as PACE) is changed during the trial, all participants should have been re-contacted to ensure that they still gave their fully informed consent regarding their participation. I hope this happened in this case. If it did not, then there are further ethical questions that need addressing.’
Another excellent blog, MrSpoonSeeker. Respect to you for keeping on keeping on although I don’t know how you do it, under the circumstances.
Interesting to note that the results for a trial about whether or not ‘higher levels of acceptance = higher quality of life’ for people diagnosed with vertigo was tweeted as being just that. Before the trial took place. Happy to provide further info, if it can help your cause in any way.
Meanwhile I wobbled down to the Millions Missing gathering in Bristol, last week. MdDS whacks me out so I wanted to show solidarity. I met inspiring people and was honoured to witness their stories. Those who had made small but significant improvements in their health had done so by changing their diets, changing their priorities (often entailing great sorrow/loss) and working hard to find out what had rendered them prone to going from vibrant health to bedridden within days – and then working on their findings. Not one of them was impressed with the PACE trial or the recommendations that resulted from it.
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Thanks, Polly. That comment seems very apposite – sorry you couldn’t leave it on the site. But you can still write to the editor: guardian.letters(at)theguardian.com
That trial re acceptance sounds interesting. Yes, I would be interested in more details – thanks!
It’s really good of you to attend the MillionsMissing demo, making up for some of those with ME who weren’t able to attend. I expect with your own condition it can’t have been easy so thanks again for supporting us!
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Thank you for fighting this awful science and, if I’m being blunt, idiot professor.
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