ME/CFS Research Review

Simon McGrath explores the big biomedical stories

Author: Simon McGrath

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.

Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

Carolyn E. Wilshire, Tom Kindlon, Robert Courtney, Alem Matthees, David Tuller, Keith Geraghty and Bruce Levin

carolyn-wilshire photo

Dr Carolyn Wilshire

It comes from a team that was led by research psychologist Dr Carolyn Wilshire and included a professor of biostatistics and several researcher-patients, each of whom has a string of publications to their name. Alem Matthees, whose long Freedom of Information battle with the PACE authors secured the release of the underlying data, is among the co-authors.

The new work, using the original analysis method published in the study protocol, revealed results that are much less impressive than the ones published by the PACE authors.

How PACE’s results really looked

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Welcome to the ME/CFS Research Review

Welcome to the ME/CFS Research Review blog, which aims to explain the most promising biomedical findings — and ignore pretty much everything else. So there will be occasional, in-depth blogs explaining the science in the studies, and what the findings mean.

moi-fb.jpgI’m Simon McGrath and I’m a bit of a science nerd. A long time ago, I did a biochemistry degree at Oxford University, fully intending to become a boffin. I even had the opportunity to do a PhD there, but decided to do something else with my life. That something was rudely interrupted by ME/CFS over 20 years ago.

At the time, I thought that science would soon provide the answers to my illness. Instead, I discovered that the standard of research was often very poor and some studies were seemingly driven more by ideology than by a search for the truth. This situation probably explains the spectacular lack of progress in developing effective treatments, or even in understanding the basis of the disease.

I started to blog about the few diamonds I found amongst the research coal. In the last few years there has been an upsurge in good-quality biomedical research, and it looks like there is plenty more to come. For that reason I have decided to create my own blog: I am hoping that these will be exciting times for research and that I will be recording and exploring the progress towards understanding and treatments.

If you like the sound of this then please follow my ME/CFS Research Review blog using the sign-up in the right hand column, or below in mobile devices. You can also find me on Twitter and Facebook, where I make shorter but more frequent posts about research.

I hope to see you here again before too long.

Simon McGrath

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