Tag: ME

Here is a video of my lecture on the PACE Trial controversy

(Link points to 
https://pwme.uk/VIDEO/PACE1080p.mp4. My talk runs from 0:00 to 42:25)

I am behind on posting it, but here we go. This video has already attracted a staggering number of worldwide views, but I thought I would (should) present it here for posterity. Kudos to everyone at the charity Hope 4 ME & Fibro NI who organised the event (back in October), shot the video, and edited in the slides to create such a polished finished product.

The video concerns the PACE Trial, a highly troubled British research study into therapies for chronic fatigue syndrome (and, by extension, myalgic encephalomyelitis). You might recall that I’ve blogged about this before (here), as well as featuring it in Psychology in Crisis.

The video is a twofer: after my talk (the first forty minutes or so), you will see a second lecture by David Tuller, senior fellow in public health and journalism at the University of California–Berkeley’s Center for Global Public Health, and high-profile commentator on ME/CFS issues.

I am aware that the video has been widely viewed within ME/CFS circles, but I believe the issues involved have much wider relevance, relating as they do to the state of psychology as a science, the way research design impacts directly on public health, and the pernicious manner in which medical and academic establishment-types can prove resistant, if not outright hostile, to well-informed professional critique.

(TL;DR: Some parts of psychology are a mess. I talk about it in a video.)

Do enjoy.

Forty-one international scientists have signed a declaration supporting Cochrane’s decision to withdraw its controversial review of exercise therapy in ME/CFS

And I’m one of them.

This is important not least because of claims appearing over the weekend that Cochrane pulled its controversial review due to pressure from brain-addled trouble-making “patient activitists,” rather than for scientific reasons.

Claims that Cochrane had been harassed were made not by Cochrane themselves, but, rather, by the authors of the controversial review, along with their friends, colleagues, and even their relatives.

I will write more about this issue soon.

In the meantime, you should check out the statement:

Cochrane has decided to temporarily withdraw a review of exercise therapies for the illness variously known as ME, CFS, ME/CFS and CFS/ME. The review reported that exercise therapy is effective in treating the illness—a finding that has provided unwarranted support for recommendations that patients should undergo the intervention known as graded exercise therapy. Yet Cochrane has found merit in complaints about serious scientific missteps and has asked the review team to respond accordingly.

Supporters of the approach to treatment endorsed by the Cochrane review have portrayed the decision for temporary withdrawal as a loss for science and an unfortunate capitulation to pressure from a vocal patient lobby. But patients have criticized the review not because they harbor anti-scientific views or are prejudiced against psychiatry. Rather, they have expressed reasonable and convincing concerns about the poor methodological choices made by the reviewers, who to date have not offered robust explanations.

We therefore believe it is important to voice our support for Cochrane’s effort to seek clarity on the issues raised not only by patients but by many others as well, including scientists, clinicians and academics. Here are some key reasons why we agree with Cochrane’s decision…

Read the rest at Virology Blog.

 

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