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List of media stories on tribunal PACE data release ruling

Sasha

Fine, thank you
Messages
17,863
Location
UK
I think we should have a list!

I'm aware of a story in Swedish medical news magazine Dagens Medicin.

mango said:
I'd say this is a really big deal! :) DagensMedicin is a website only for health professionals, only publishing stuff from the professionals' perspective (never the patients' perspective). Patients aren't even allowed to leave comments, they get deleted quite quickly regardless of content :(

DagensMedicin has published some really ugly and untrue stuff in articles about ME/CFS and pwme over the years, with a very obvious BPS bias, and they have very often allowed many long horrendous and abusive discussions between "professionals" in the comments sections etc...

This article isn't bad, though! (Could have been much better, too.) What a pleasant surprise! :)

Google Translate version:

Dagens Medicin said:
Sentenced supply raw materials to the PACE study

British court has decided that the university behind the renowned Pace study on chronic fatigue syndrome, should publish raw data. But the legal battle is not over.

Published: 2016-08-18 14:18
Jesper Cederberg jesper.cederberg@dagensmedicin.se
The purpose of the PACE study was to evaluate the treatment of chronic fatigue syndrome , also called myalgic encephalomyelitis. The generated several articles published in The Lancet. They argued inter alia that cognitive behavioral therapy and gradually increase the training could be effective treatment, which caused controversy.

Patient associations went to the ceiling, petitions were made to parts of the study would be withdrawn, and some scientists have pointed to serious problems of methodology and demanded an independent review. ICO, a British authority on information rights, demanded that the raw materials involved in the study were published...

Read the rest on the page.

Remember that we shouldn't reproduce whole articles here - just a few paras and a link. We should read the full stories on their own websites to reward them for their coverage with traffic.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Retraction Watch:

Retraction Watch said:
Retraction Watch
Tracking retractions as a window into the scientific process

UK tribunal orders release of data from controversial chronic fatigue syndrome study
with 19 comments

court-case.jpg
A tribunal in the UK has rejected an appeal by Queen Mary University of London, who sought to reverse a previous order that they release data from a controversial 2011 paper in The Lancet about chronic fatigue syndrome (CFS).

The decision is one in a long series of judgments about the so-called PACE trial, which reported that two treatments — known as cognitive behavioral therapy and graded exercise therapy — helped alleviate the symptoms of the condition. But ever since The Lancet article and follow-up papers have been published, patients and critics have questioned the conclusions and clamored to see the raw data.

The main criticisms: The findings may prompt some to believe chronic fatigue is a mental, not a physical, disorder, and the PACE program could actually be harmful to patients by encouraging too much exercise. These criticisms were recently bolstered by a re-analysis of the evidence by the Agency for Healthcare Research and Quality, which downgraded its original conclusions about the effectiveness of cognitive behavioral therapy and graded exercise therapy...

Read the rest:

http://retractionwatch.com/2016/08/...controversial-chronic-fatigue-syndrome-study/
 

Kalliope

Senior Member
Messages
367
Location
Norway
Good idea @Sasha !

Undark has mentioned the tribunal ruling in a roundup on science.

Never heard of them before, (I spotted this in a tweet from David Tuller) but in "about us" Undark says:

Undark is an editorially independent, foundation-supported digital publication of the Knight Science Journalism Program, which is headquartered at the Massachusetts Institute of Technology in Cambridge. Administratively, KSJ resides under the institute’s Program in Science, Technology & Society, a division of the School of Humanities, Arts & Social Sciences
 

charles shepherd

Senior Member
Messages
2,239
A press release on the FOI tribunal judgement has been prepared and is being sent out to health journalists - so there should be more media coverage to come

I have been talking to a BBC journalist this week but this item would form part of a more thorough 'work in progress' documentary on controversies and uncertainties surrounding ME/CFS
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Can we keep this thread for actual published stories, please, and discussion of where to send the press release to the other thread that Charles Shepherd linked to? Just so people can easily find the stories?

Thanks! :thumbsup:
 

Cheshire

Senior Member
Messages
1,129
Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released

A tribunal has ruled that data from a controversial £5m treatment trial into Chronic Fatigue Syndrome (CFS) must be released, rejecting an appeal from the university that had carried out the study.

Queen Mary University of London (QMUL) spent £200,000 on legal fees to appeal the Information Commissioner’s decision that it should release anonymised data from the trial, called PACE, whose results were published in 2011.

[...]
QMUL made a number of accusations of harassment from patients, while QMUL’s expert witness characterised PACE trial critics as “young men, borderline sociopathic or psychopathic”, remarks the Information Commissioner dismissed as “wild speculations”.

The university’s assessment of activist behaviour was found to be “grossly exaggerated”.

https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/


Chronic Fatigue Syndrome sufferers have just had a small victory



https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
This article is really well researched, and written. It's fantastic and probably one of the best I have seen to date.

wowwee. Yes, definitely the best concise summary of PACE issues I have seen to date.

Wondering if this should get its own thread? It is on the data release, but also sums up PACE more broadly...and it is just really good and we should share it widely :)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
A story from the center for welfare reform

http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

They did an earlier report linking PACE to welfare reforms in the UK
wowwee. Yes, definitely the best concise summary of PACE issues I have seen to date.

Wondering if this should get its own thread? It is on the data release, but also sums up PACE more broadly...and it is just really good and we should share it widely :)
Just for you (and everyone else)...
New thread courtesy of @Dolphin:
http://forums.phoenixrising.me/inde...n-pace-trial-august-19-well-referenced.46289/
 

Cheshire

Senior Member
Messages
1,129