A general thread on the PACE trial!

https://twitter.com/user/status/1314640738202910722

 

This sort of framing makes it so easy for people to dismiss us. I'm sure that the reporter didn't intend it, but that it can occur without it being a deliberate attempt to undermine our concerns is pretty disastrous. I guess that it's easier to briefly mention stigma and lived experience, rather than lay out the more substantial problems. I'm not sure what can be done to improve things there.

Interesting that Horton didn't respond to a follow-up e-mail about PACE.

 

Interesting to see it discussed but did not adequately portray the circumstances and impact. It is so much worse than this. At least people interested can read it in-depth from the link to Tuller's blog.

More of a slap on the wrist. I have no idea what Horton is still doing in his position. So many failures.

 

I understand your point but I think you're over-focused on it. And I think there's a split in how people in the US and UK view this "psychological vs biomedical" issue. Anyway, most people won't notice that line. They'll read the passage in the context of Horton being a dick about a lot of things, and in context of the fact that CDC removed the recommendations, which is an implicit endorsement of the concerns raised. The story linked to my work and to a piece that Julie and I wrote about the CDC.
And yes, what happened is a lot worse that the language indicates. But even a couple of years ago PACE wouldn't have been mentioned as an issue at all.

 

That's true. It's progress. It just feels like we're pushing a boulder up a hill, and I wish we could take off the roller-skates.

 

I will leave this here for no particular reason, other than that it's extremely relevant.

https://twitter.com/user/status/1317097621379518467


The quote in the tweet represents Sharpe, Wessely and their peers to a tit. I have no idea why they ever thought they have what it takes to attack this problem in a way that allows them to conclude that if they can't succeed, no one will. But here we are. Millions of destroyed lives later, they still haven't learned a damn thing out of being completely out of their depth.

 

Interesting discussion ensues:

https://twitter.com/user/status/1318160837866098688

 

https://twitter.com/user/status/1322829559142752262

https://twitter.com/user/status/1322828786610675717

 

freudian slip or intentional?

 

More of a me misusing words again thing. It often accidentally works out, somehow. Language is so malleable. I love it.

 

I wonder who's telling them that...

https://twitter.com/user/status/1326629500084506624

 

"No More Mr NICE Guy…" by Prof. Brian Hughes
https://www.s4me.info/threads/no-more-mr-nice-guy…-by-prof-brian-hughes.17915/
https://twitter.com/user/status/1330247729507946501



Moderator note: To discuss this article, please go to this thread:
"No More Mr NICE Guy…" by Prof. Brian Hughes

 

Assessment of the PACE trial by the NICE guidelines committee:

[H] Appendices for the management of ME/CFS
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-8

Appendix D–Effectiveness evidence: p. 31ff

PACE trial: ("White 2011") : p. 149f

'Nice' detail among "Further details":

"1. type of intervention: based on deconditioning and exercise intolerance theories of chronic fatigue syndrome;"

see also https://www.s4me.info/threads/no-more-mr-nice-guy…-by-prof-brian-hughes.17915/page-2#post-304021

 

https://twitter.com/user/status/1338292345486405633

 

https://twitter.com/user/status/1350017759212572672

 

https://twitter.com/user/status/1350158882006466561

 

well done Nell and her teachers

 

The following links and quotes have been posted at diverse places on the forum before. Thought they might be worth reposting.

Science Media Centre: Expert reaction to letter from the HRA [Health Research Authority] to Norman Lamb regarding the S&T Committee’s inquiry on Research Integrity and the PACE trial

Reactions to a letter from the Health Research Authority (HRA) to Norman Lamb MP on an inquiry into the PACE trial.

Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford, said:

Prof Malcolm Macleod, Professor of Neurology and Translational Neuroscience, University of Edinburgh, said:

Prof Stephen Evans, Professor of Pharmacoepidemiology, London School of Hygiene & Tropical Medicine (LSHTM), said:

Declared interests

https://www.sciencemediacentre.org/...iry-on-research-integrity-and-the-pace-trial/

 

The HRA letter to Norman Lamb MP, Science and Technology Committee ,
https://www.parliament.uk/globalass...Research-Authority-to-Chair-re-PACE-trial.pdf

From the introductory lines, p.2:

"The continuing debate about the design of the study is not an indication that it should not have been approved, but if there was a general and consistent view that it was of poor scientific quality then it would give us cause for concern.

"This is not the case in relation to PACE. A review of the reception of the study shows indications that the science is sound, as well as evidence of concern.

"The results of the trials were published in high impact journals with peer review processes that would generally be regarded as robust (though not infallible).

"The robustness of the PACE trial has been considered in a Cochrane review that classified it as high quality. This was also challenged by critics, and the author of the review responded to those criticisms.

"It would be as inappropriate for the regulator to disregard these indications that the trial was of high quality as to ignore the criticisms that have been expressed. The range of views suggests that the debate needs to be continued, not constricted by regulatory action."

Edited to add:
Wikipedia about the chair of the HRA, Jonathan Montgomery: