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List of media stories on tribunal PACE data release ruling

moosie

moosie

Messages
85
Does this count? No idea what this website (What Doctors Don't Tell You) is but looks like they used a press release from MEAction.

https://www.wddty.com/news/2016/08/...-all-in-the-mind-forced-to-disclose-data.html
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› News › 2016 › August › Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data › August 2016
Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
August 22nd 2016 in Chronic Fatigue Syndrome, Fatigue

Researchers of a controversial study, which had effectively implied that chronic fatigue syndrome (CFS) is ‘all in the mind’, have been forced by a tribunal to release their data so that independent researchers can assess their findings.
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and
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The £5m study concluded that both approaches could “moderately improve”, and that 22 per cent had been effectively cured—conclusions that some academics and patient groups questioned, as it suggested that CFS was ‘all in the mind’ rather than having a physiological aspect, as other research had discovered.
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More on website

https://www.wddty.com/news/2016/08/...-all-in-the-mind-forced-to-disclose-data.html
 
Esther12

Esther12

Senior Member
Messages
13,774
moosie said:
Does this count? No idea what this website (What Doctors Don't Tell You) is but looks like they used a press release from MEAction.
Click to expand...

I think that they're a pro-alternative medicine thing? Not sure where the 'all in the mind' quote came from.

Or "some academics and patient groups questioned, as it suggested that CFS was ‘all in the mind’ rather than having a physiological aspect, as other research had discovered."

Oh well.
 
hixxy

hixxy

Senior Member
Messages
1,229
Location
Australia
Seems the coverage so far has been pretty lacking. Certainly nothing compared to the viral responses the proponents of GET/CBT get for their publications. I don't think I've seen even one major health website or mainstream news outlet. Maybe it would take a retraction to get that kind of response?
 
wdb

wdb

Senior Member
Messages
1,392
Location
London
hixxy said:
Seems the coverage so far has been pretty lacking. Certainly nothing compared to the viral responses the proponents of GET/CBT get for their publications. I don't think I've seen even one major health website or mainstream news outlet. Maybe it would take a retraction to get that kind of response?
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inews is mainstream (292,801 readers) and had two articles, though don't know if they made it into the print edition.
 
Cheshire

Cheshire

Senior Member
Messages
1,129
The BMJ: Tribunal orders university to release data from PACE chronic fatigue study
(behind a paywall)

A tribunal has ruled that Queen Mary University of London must release data from a trial looking at treatment of chronic fatigue syndrome, which found that cognitive behavioural therapy and graded exercise therapy helped to alleviate the symptoms of the condition.1

The findings of the PACE (Pacing, graded Activity, and Cognitive behaviour therapy: a randomised Evaluation) trial, published in the Lancet in 2011,2 were questioned by some academics and patients, who argued that the PACE programme could harm patients.

In March 2014 Alem Matthees, a patient in Australia, submitted a freedom of information request to Queen Mary University of London, where some of the PACE researchers were based, asking …
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http://www.bmj.com/content/354/bmj.i4614
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Cheshire said:
The BMJ: Tribunal orders university to release data from PACE chronic fatigue study
(behind a paywall)
http://www.bmj.com/content/354/bmj.i4614
Click to expand...

A post with the full text has just gone up in the Invest In ME group on Facebook, I believe it should be viewable even if you don't have Facebook - www.facebook.com/groups/5804522506/permalink/10153899767177507/

I forgive them even more now, one quote from the QMUL response but two good ones from @Keith Geraghty and @Jonathan Edwards - thank you gentlemen :thumbsup:
 
AR68

AR68

Messages
38
AndyPR said:
A post with the full text has just gone up in the Invest In ME group on Facebook, I believe it should be viewable even if you don't have Facebook - www.facebook.com/groups/5804522506/permalink/10153899767177507/

I forgive them even more now, one quote from the QMUL response but two good ones from @Keith Geraghty and @Jonathan Edwards - thank you gentlemen :thumbsup:
Click to expand...

I'd have preferred it if the BMJ had put the JE quote about alleged behaviour of patients in some context by pointing out that the judgment criticised the evidence given regarding patients.
 
D

Dolphin

Senior Member
Messages
17,567
http://www.6minutes.com.au/news/latest-news/not-taking-chronic-fatigue-lying-down
Not taking chronic fatigue lying down
23 August, 2016 0 comments






Distressed.aspx

An Australian man with chronic fatigue syndrome has forced UK researchers to release raw data from a highly controversial trial on the...

This site is accessible only by Australian-registered health practitioners. Click here to log in or register.
Click to expand...
 
A.B.

A.B.

Senior Member
Messages
3,780
I'm glad to see the BMJ article. It's pretty decent, but one can see that the writer was not familiar with the topic from phrases such as

The findings of PACE were questioned by some academics and patients, who argued that the PACE programme could harm patients.
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The main criticism is that the claim of recovery doesn't stand up to scrutiny.

Conclusion: there's still room for doing a better job presenting our concerns about the PACE trial.

I consider PACE to be evidence that CBT and GET are largely ineffective at treating the underlying disease due to lack of improvement on objective measures and the null results at long term followup, and think that an indepedent analysis of the data according to the original study protocol would confirm this (the authors altered the protocol at a point in time where it was possible to get a sense of the outcome).
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
moosie said:
Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
https://www.wddty.com/news/2016/08/...-all-in-the-mind-forced-to-disclose-data.html
Click to expand...
WDDTY said:
The £5m study concluded that both approaches could “moderately improve”, and that 22 per cent had been effectively cured—conclusions that some academics and patient groups questioned, as it suggested that CFS was ‘all in the mind’ rather than having a physiological aspect, as other research had discovered.
Click to expand...
Interesting to frame the 'recovery' claims in those terms. i.e. the simple logical conclusion that if you can be 'cured' by CBT then your illness must indeed be "all in your mind" rather than only "having a psychological aspect".
 
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