The University of Bristol seems to be a convergence point.
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JHP Editorial: Special Issue on the PACE Trial
- Thread starter Cheesus
- Start date
NelliePledge
Senior Member
- Messages
- 807
Even Action for ME have posted a link on their Facebook 
Action for M.E.
4 hrs ·
The Journal of Health Psychology yesterday released a special issue dedicated to the PACE trial as part of a continuing scientific debate into the trial’s validity.
http://journals.sagepub.com/toc/hpqa/current
The PACE trial, the only large-scale research trial undertaken to test the effectiveness of cognitive behavioural therapy (CBT), graded exercise therapy (GET) and pacing, as reliable treatments for people with M.E., has been subject to considerable scrutiny and criticism since publication of its initial results in 2011.
Action for M.E. takes the position that it is vital that valid questions, raised about the science conducted as part of the PACE trial, be addressed as a matter of urgency, and that the experiences of patients who have experienced harm as a result of undertaking GET and/or CBT must not be ignored. (Please note Action for M.E. does not recommend any single form of intervention or treatment for M.E.)
Journal of Health Psychology - Volume 22, Number 9, Aug 01, 2017
Table of contents for Journal of Health Psychology, 22, 9, Aug 01, 2017
JOURNALS.SAGEPUB.COM
Action for M.E.
4 hrs ·
The Journal of Health Psychology yesterday released a special issue dedicated to the PACE trial as part of a continuing scientific debate into the trial’s validity.
http://journals.sagepub.com/toc/hpqa/current
The PACE trial, the only large-scale research trial undertaken to test the effectiveness of cognitive behavioural therapy (CBT), graded exercise therapy (GET) and pacing, as reliable treatments for people with M.E., has been subject to considerable scrutiny and criticism since publication of its initial results in 2011.
Action for M.E. takes the position that it is vital that valid questions, raised about the science conducted as part of the PACE trial, be addressed as a matter of urgency, and that the experiences of patients who have experienced harm as a result of undertaking GET and/or CBT must not be ignored. (Please note Action for M.E. does not recommend any single form of intervention or treatment for M.E.)
Journal of Health Psychology - Volume 22, Number 9, Aug 01, 2017
Table of contents for Journal of Health Psychology, 22, 9, Aug 01, 2017
JOURNALS.SAGEPUB.COM
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
and here is the email I sent AfME soon after the PACE Trial results were released:Even Action for ME have posted a link on their Facebook
Action for M.E.
4 hrs ·
The Journal of Health Psychology yesterday released a special issue dedicated to the PACE trial as part of a continuing scientific debate into the trial’s validity.
http://journals.sagepub.com/toc/hpqa/current
The PACE trial, the only large-scale research trial undertaken to test the effectiveness of cognitive behavioural therapy (CBT), graded exercise therapy (GET) and pacing, as reliable treatments for people with M.E., has been subject to considerable scrutiny and criticism since publication of its initial results in 2011.
Action for M.E. takes the position that it is vital that valid questions, raised about the science conducted as part of the PACE trial, be addressed as a matter of urgency, and that the experiences of patients who have experienced harm as a result of undertaking GET and/or CBT must not be ignored. (Please note Action for M.E. does not recommend any single form of intervention or treatment for M.E.)
Journal of Health Psychology - Volume 22, Number 9, Aug 01, 2017
Table of contents for Journal of Health Psychology, 22, 9, Aug 01, 2017
JOURNALS.SAGEPUB.COM
http://forums.phoenixrising.me/index.php?entries/my-letter-to-afme-14-march-2011.2169/
slysaint
Senior Member
- Messages
- 2,125
No. And it doesn't oppose any either.
ballard
Senior Member
- Messages
- 152
@TomKindlon
Congratulations to all of the fine writers who have had their papers published in the Journal of Health Psychology.
I'm so grateful for their hard work. I hope that the PACE trial researchers will soon be held accountable for the suffering they have caused.
Esther12
Senior Member
- Messages
- 13,774
They're over a decade late, from their role in achieving funding for, and helping run the PACE trial. The criticisms made back then were already more than 'valid questions'. I get the impression that there's no-one who has half a clue of what's going on as any power at Action for ME.
BurnA
Senior Member
- Messages
- 2,087
I get the impression they are waking up to a new reality.
They seem to be keen to say the right things, maybe they were losing patients?
Esther12
Senior Member
- Messages
- 13,774
Yeah - they now seem to be motivated by a desire to say things that don't piss patients off too much, while still lacking any real understanding of the issues.
Tom Kindlon
Senior Member
- Messages
- 1,734
Thank you very much.
ballard
Senior Member
- Messages
- 152
Thank you so much. Glad you liked it!
And their patients were losing patience.
adreno
PR activist
- Messages
- 4,841
They were handed a copy, but I don't expect it to have much impact. The problems surrounding PACE is of a political nature; being in the right facts-wise is not enough.
I agree
I'm wndering if objections to PACE are gaining enough weight yet for NICE to have to be seen to take them seriously, it's a bit more public now
Ithink not, being cynical.
Probably not. Their response to Tuller promotes the view that ME patients are dangerous militants, which only really makes sense if they also claim that ME is a psychological disorder which somehow makes ME patients more dangerous than other patients.
Whoever is dealing with ME in NICE is completely in the psychosocial camp, for whatever reason. I suspect it's financial in this case, rather than particularly dogmatic, but the outcome is the same for us. NICE will only change how it treats ME and ME patients when NICE is forced to change.
MeSci
ME/CFS since 1995; activity level 6?
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- 8,231
- Location
- Cornwall, UK
I left a few years ago...
Join up and leave again. They don't seem to have listened the first time.
Esther12
Senior Member
- Messages
- 13,774
The surveilance review, and NICE's response to Tuller, both make it clear that they are being driven by prejudice and incompetence. They're not going to start the process to review their guidelines unless they are forced to by something big, like a change of direction from Cochrane (whose work their surveilance review relied upon). If they think patients are so terrifying and unreasonable that they are not even willing to let us know who is asserting power over us, then why would they start a prolonged and open process of reviewing their guidelines?
To me it sounds like patient groups have been strung along by people at the top of PACE claiming that their concerns are being taken seriously, when really they're just deferring to 'experts' like Crawley.