BMJ: Pressure grows on Lancet to review “flawed” PACE trial

From the Pharmaceutical Journal:

Ingrid Torjesen is a freelance journalist specialising in health and health policy. She is a regular contributor to The BMJ and the Health Service Journal and is editor of The Advisor, a magazine for people working in smoking cessation services. In the past she has acted as news editor for The BMJ; opinion, features and news editors for the HSJ and features editor for Nursing Times. Staff posts include associate editor and news editor of GP newspaper, news editor of Pulse, and reporter at Australian Doctor, based in Sydney. She has a degree in Biological Sciences specialising in Genetics.
 
One can post replies on the BMJ website.

They generally post a lot/most of them. One can increase the chances of them posting it if you do it in the style of scientific article by having a reference section. Even just one reference would qualify, which could be the Torjesen article
 
There are some problems with this coverage, but in many ways it seemed so fair to us that it made me wonder if the BMJ editor who normally assess ME/CFS stuff was on holiday. This didn't read like it was part of a propaganda campaign against us.

A five year battle by Australian patient, Alem Matthees, succeeded in getting Queen Mary University of London t o release the original trial data under the UK Freedom of Information Act.3 4 A preliminary reanalysis of that data 5 concluded that the p reviously reported recovery rates were inflated fourfold and that the recovery rates in the cognitive behavioural therapy and graded exercise therapy groups were not significantly higher than in the group that received specialist medical care a lone. 6
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Really, they should have mentioned that this reanalysis was conducted according to the trials 2007 protocol, while the PACE team had deviated from their own protocol with their analysis.

On its publication patients expressed anger be cause they thought that it suggested that ME/CFS was all in the mind and could be cured by cognitive behavioural therapy and exercise, when in fact some patients reported that such treatments caused them harm.
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I hate the emphasis on this 'all in the mind' stuff - it's such a distraction, and always gives the impression patients start with foolish assumptions about mental illness or the way mind and body can interact. Was this ever the issue driving concerns about PACE? Certainly not amongst the people I'd been speaking to about it. Anyway, even if ME/CFS was a MH problem, the problems with PACE would still remain, and would still need to be spoken out against. I think that the main way that the stigma of MH affected the debate around PACE was that authority figures in UK medicine thought that there was no need to engage respectfully with the concerns of patients suspected of having MH problems.

In 2016, Simon McGrath, who has a biochemistry degree from the University of Oxford and is unable to work because of ME/C FS, wrote a blog f or Th e BMJ arguing that the PACE trial shows why patients need to scrutinise studies about their health. 7

Academics are now voicing concerns about the trial, he wrote, but “for many years, researchers and the medical establishment would not engage with patients who made the same criticisms — simply because, it seems, they were patients. ”
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The inclusion of that McGrath quote makes this piece so much better. Go @Simon M ! Your blog is so clearly the best thing the BMJ has ever published on ME/CFS... even after they made it worse by editing it without your consent!
 
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Also - this coverage in the BMJ is another reason to be grateful for the coverage from Whipple in the Times. Even if that coverage didn't have room to say much (and repeated the 'all in the mind' line) it helped indicate that this was a story deserving of coverage.
 
Over a hundred academics, patient groups, lawyers, and politicians have now signed an open letter to the Lancet calling on the journal to commission an independent reanalysis of the data from the PACE trial—a study into treatment for myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), which it published the results of in 2011.1
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I would have preferred if it was clear that there were over 100 academics alone who signed it and then mentioned the others.
 
I wonder if the BMJ is ever going to get around to correcting their 2011 coverage of the PACE trial:

Patients with chronic fatigue syndrome have nothing to fear from CBT or graded exercise, say the authors. Both work as a bolt on to specialist care, although their overall effects looked modest. Less than a third of patients were cured by either treatment (30% (44/148) after CBT and 28% (43/154) after graded exercise therapy).
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https://www.meassociation.org.uk/20...-coverage-of-the-pace-trial-23-february-2011/
 
Esther12 said:
this coverage in the BMJ is another reason to be grateful for the coverage from Whipple in the Times.
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Absolutely. I am sure this would not have happened without the Times article. Even the opening phrasing is similar, and the list of universities represented. Coverage generates coverage. This article in BMJ has now made it news not just in the general world but in the medical journal world. Whatever the limitations of any specific article, it's clear that the CBT/GET ideological brigades no longer control the narrative.
 
A reply to the article:

Please do not misunderstand patient views
This editorial stated "On its publication patients expressed anger because they thought that it suggested that ME/CFS was all in the mind".

In anticipation of any future comments about this, I'd like to point out that this is a mischaraterisation of patient views. I have communicated with a quite a number of patients who are critical of the trial in question and none of them were angry because "it suggested thats ME/CFS was all in the mind". I don't know where this view comes from, but it seems to be a misunderstanding of patient views.

Patients were angry that the results of the trial were excessively spun, and that much of the outcome measures specified in the protocol were not reported in the manuscript published in The Lancet. In particular, the thresholds for "positive outcome" and "recovery" were heavily watered down such that they were no longer meaningful.
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https://www.bmj.com/content/362/bmj.k3621/rr
 
Esther12 said:
I hate the emphasis on this 'all in the mind' stuff - it's such a distraction, and always gives the impression patients start with foolish assumptions about mental illness or the way mind and body can interact. Was this ever the issue driving concerns about PACE? Certainly not amongst the people I'd been speaking to about it. Anyway, even if ME/CFS has a MH problem, the problems with PACE would still remain, and would still need to be spoken out against. I think that main way that the stigma of MH affected the debate around PACE was that authority figures in UK medicine thought that there was no need to engage respectfully with the concerns of patients suspected of having MH problems.
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This, this and this again :)

The original PACE trial and the reanalyses showing its flaws tell us one clear fact: regardless of the underlying pathology of ME/CFS (be it immunological, metabolic, neurological or psychological), Graded Exercise Therapy does not work. Now, that may provide evidence that the 'false illness belief' hypothesis is itself false - because one would think that if patients really thought erroneously that exercise would make them ill, then getting gradually to do exercise would undermine that belief leading to recovery - but is isn't the main case. And, speaking personally, I would have bloody loved it if a well-designed trial showed a therapy to be effective regardless of the pathology underpinning that treatment; I'd much rather have a condition shown to be psychological and curable than physical and not.
 
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