PACE trial’s findings fundamentally challenged by a new study (Simon McGrath blog 22 Mar)

Simon M

Simon M

Senior Member (Voting Rights)
I’ve just posted a blog about the important new paper from @Carolyn Wilshire @Tom Kindlon, David Tuller and others that exposes serious flaws in the PACE Trial

PACE trial’s findings fundamentally challenged by a new study

In a nutshell: Analysing PACE the way the authors originally promised to do showed that CBT and GET didn’t do much to improve self-reported physical function and fatigue and did not lead to recovery. Even the very limited self-reported gains in this unblinded trial are likely to be illusory because they are not backed up by meaningful gains in objective measures, such as fitness. The self-report gains also appear not to last. We now need biomedical research to pave the way for effective treatments.​

Researchers and patients have been pointing out problems with the PACE trial for years. A new paper goes further by reanalysing the raw data to give the results the way the trial authors originally said they would give them, before they opted for softer measures of success. The new paper, published in the journal BMC Psychology, also sets out all the flaws of the PACE trial in one place.

Read more
https://mecfsresearchreview.me/2018...s-are-comprehensively-exposed-by-a-new-study/
 
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Trish said:
I've re-tweeted for what it's worth, but I have a tiny number of followers (192) compared with big stars of the ME world like @Tom Kindlon, @Carolyn Wilshire or @Simon M, and I suspect all my followers follow them as well. My twitter feed is overflowing with links to this great paper and all the articles relating to it - we're all re-tweeting each other like mad.
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Thanks. And it’s really good to hear you have those links coming in. I fear it might also be The Bubble in action :(.
 
Trish said:
I've re-tweeted for what it's worth, but I have a tiny number of followers (192) compared with big stars of the ME world like @Tom Kindlon, @Carolyn Wilshire or @Simon M, and I suspect all my followers follow them as well. My twitter feed is overflowing with links to this great paper and all the articles relating to it - we're all re-tweeting each other like mad.
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Not critising but just to point out to everyone I still think it is useful to tweet, like or retweet even if one doesn't have many followers. Twitter now uses algorithms like Facebook to decide what is highlighted in people's feeds.
 
Simon M said:
In a nutshell: Analysing PACE the way the authors originally promised to do showed that CBT and GET didn’t do much to improve self-reported physical function and fatigue and did not lead to recovery. Even the very limited self-reported gains in this unblinded trial are likely to be illusory because they are not backed up by meaningful gains in objective measures, such as fitness. The self-report gains also appear not to last. We now need biomedical research to pave the way for effective treatments.
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That's really good Simon, because it covers the gap I think is often lost in the detail when people talk about the modest gains reported ... that those reported so-called gains were themselves fictitious.
 
Excellent blog @Simon M.

As a non-scientist, and someone who was once duped by the collective beliefs about ME, there is one small but important aspect I think would be really worth bringing out in its own right somewhere along the line. You clearly state it in your blog, but not so long back it would have been completely lost on me, when mixed with all the other info.

The fact there are two major bias components to the self reporting of PACE-style CBT and GET outcomes: The self-report expectation bias, that can come with any unblinded treatment, be it tablets, whatever. And the immensely virulent self-report bias-source, that is the self-fulfilling nature of treatments rooted in psyching people up to keep telling themselves, and therefore others, they are getting better, and feeling better. You cover it very well in your blog. But I know from where I have come from, the major significance of the latter would have got lost in the weeds for me once upon a time.
 
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