PACE Trial and PACE Trial Protocol

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Dolphin

Senior Member
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17,567
http://gtr.rcuk.ac.uk/projects?ref=G0200434

The PACE trial; A RCT of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome
Lead Research Organisation: Queen Mary, University of London
Department Name: Wolfson Institute
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Under outcomes

Further Funding
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Description ARUK specific call
Amount £1,000,000 (GBP)
Organisation Arthritis Research UK
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 05/2016
End 04/2019
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Description MRC Clinical Trials Grant Extension
Amount £725,000 (GBP)
Organisation Medical Research Council (MRC)
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 05/2009
End 06/2011
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Description MRC PhD fellowship
Amount £1 (GBP)
Organisation Medical Research Council (MRC)
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 01/2011
End 12/2014
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It looks very much like Arthritis Research UK has given £1,000,000 in funding, presumably for the long-term 5-year follow-up study.

Separate thread on this:
http://forums.phoenixrising.me/inde...aruk-funds-qmul-re-pace-trial-with-£1m.46669/
 
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D

Dolphin

Senior Member
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17,567
http://gtr.rcuk.ac.uk/projects?ref=G0200434

Description Cochrane review of exercise therapy for CFS
Geographic Reach Multiple continents/international
Policy Influence Type Influenced training of practitioners or researchers
Impact Systematic review and meta analysis showing that graded exercise therapy is an effective and safe intervention to improve the health of patients suffering from CFS.
URL http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003200.pub3/pdf/standard

Description Graded exercise therapy manual featured in HANDI guidance
Geographic Reach National
Policy Influence Type Citation in clinical reviews
URL http://www.racgp.org.au/your-practi...xercise-therapy-for-chronic-fatigue-syndrome/


Description IAPT scheme extended to long term conditions and medically unexplained symptoms
Geographic Reach National
Policy Influence Type Participation in a advisory committee
Impact 2 principal investigators are members of the Department of Health steering group to extend the Increasing Access to Psychological Therapies to UK primary care patients with medically unexplained symptoms.


Description IAPT team training
Geographic Reach Local/Municipal/Regional
Policy Influence Type Influenced training of practitioners or researchers
Impact PDW provided advice and leadership to an IAPT DoH pathfinder site to provide graded exercise therapy to patients with longterm health conditions and medically unexplained symptoms.


Description Information Technology Act of 2014
Geographic Reach National
Policy Influence Type Participation in a national consultation
Impact The IT Act of 2014 includes an exemption to the existing Freedom of Information Act 2000, to exempt current research from the FOI act requests, so long as release of data can be shown to be detrimental to the research. This will protect UK research in the future, and the PACE trial, which has taken 168 FOI requests since 2011, with some damage to the trial as a consequence, provided a precedent that helped to move this exemption forward.
URL http://www.justice.gov.uk/downloads/information-access-rights/foi/foi-exemption-s22a.pdf


Description NICE affirmed guideline on management of CFS/ME
Geographic Reach National
Policy Influence Type Citation in other policy documents
Impact NICE publically affirmed that the results of the PACE trial strengthened the evidence base for cognitive behaviour therapy and graded exercise therapy in its current (2007) guideline. Original guideline - http://publications.nice.org.uk/chr...lgic-encephalomyelitis-or-encephalopathy-cg53.
URL http://publications.nice.org.uk/chr...lgic-encephalomyelitis-or-encephalopathy-cg53
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D

Dolphin

Senior Member
Messages
17,567
http://gtr.rcuk.ac.uk/projects?ref=G0200434
Outcomes

Dissemination

Description British Association of Cognitive and Behavioural Psychotherapists (BABCP) Annual Conference
Form Of Dissemination A talk or presentation
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Professional Practitioners
Results Presentation to clinical psychologists
Impact Implementation in clinical practice
Year(s) Of Dissemination 2011

Description Clinicians' conferences
Form Of Dissemination A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Health professionals
Results Several talks at regional meetings of BACME, eg in Bristol, Newcastle, London, and keynote speaker in March 2012 for their national biennial conference.
Impact Good feedback from clinicians and reports of implementing changes to clinical practice
Year(s) Of Dissemination 2011


Description European Health Psychology Conference 2011
Form Of Dissemination A talk or presentation
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results Plenary presentation
Impact Clinical implementation
Year(s) Of Dissemination 2011


Description Newsletters to PACE trial participants
Form Of Dissemination A magazine, newsletter or online publication
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results Summary of the trial results, written in lay language was sent by post to all 640 participants in the trial in the week after the main results were published.
Impact Informal feedback very positive.
Year(s) Of Dissemination 2011


Description Press Conference
Form Of Dissemination A press release, press conference or response to a media enquiry/interview
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results Press conference to release results of long term follow up from PACE trial, organised by Science Media Centre
Year(s) Of Dissemination 2016
URL http://www.sciencemediacentre.org/cfsme-pace-trial-follow-up-study/


Description Press conference
Form Of Dissemination A press release, press conference or response to a media enquiry/interview
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results Press conference, hosted by Science Media Centre, to announce results of mediation study from the PACE trial, which was well covered in international media.
Year(s) Of Dissemination 2016

URL http://www.sciencemediacentre.org/cfsme-the-next-step-in-the-controversy-2/

Description Publicity in ME charites' newletters and magazines
Form Of Dissemination A magazine, newsletter or online publication
Geographic Reach National
Primary Audience Public/other audiences
Results Many articles in such magazines
Impact Some controversy over findings, but two charities particularly receptive.
Year(s) Of Dissemination 2011


Description Royal College of Psychiatrists
Form Of Dissemination A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Health professionals
Results One presentation to ~170 liaison psychiatrists at annual conference in Glasgow. Another to the RCPSych annual conference in Brighton, attended by ~200 in audience.
Impact Well received by both audiences
Year(s) Of Dissemination 2011,2014


Description Scienc media centre press conference - Health economics
Form Of Dissemination A press release, press conference or response to a media enquiry/interview
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results Press conference in August 2012 to publicise the cost-effectiveness results.
Impact PIcked up by UK national media and some international media.
Year(s) Of Dissemination 2012


Description Science Media Centre press conference
Form Of Dissemination A press release, press conference or response to a media enquiry/interview
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results This was the press conference to launch the main results published in The Lancet, and the story of the trial results was published in major newspapers, radio, and TV, including all the UK national main papers and New York Times and other international media. Feb 2011.
Impact Large spread to international public.
Year(s) Of Dissemination 2011


Description World conferences to clinicians
Form Of Dissemination A talk or presentation
Geographic Reach International
Primary Audience Health professionals
Results My colleagues and I have presented this work to: Health Psychology MSc course, (Ireland), European Association of Consultation and Liaison Psychiatry (Budapest, Hungary), World Congress of Psychosomatic Medicine, (Seoul, Korea), American Academy of Psychosomatic Medicine (USA)
Impact Positive feedback from all.
Year(s) Of Dissemination 2011,2012
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D

Denise

Senior Member
Messages
1,095
Dolphin said:
http://gtr.rcuk.ac.uk/projects?ref=G0200434



Under outcomes










It looks very much like Arthritis Research UK has given £1,000,000 in funding, presumably for the long-term 5-year follow-up study.
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Thank you for posting this! I can't say that I "like" it, but I appreciate being made aware of it.

My ignorance is showing - why is funding coming from Arthritis Research UK and what else have they funded (re ME)?
 
Hutan

Hutan

Senior Member
Messages
1,099
Location
New Zealand
It is pretty unbelievable. If I had arthritis or had a child with arthritis, I'd be very annoyed that research funds were being spent on this.

@charles shepherd, do you think someone (ie you:)) could contact Arthritis Research UK and find out why they sees this as a priority for its funds? Perhaps if the problems with PACE were explained, someone there might think twice? Surely not everyone there is onboard with this decision.
 
D

Dolphin

Senior Member
Messages
17,567
Dolphin said:
http://gtr.rcuk.ac.uk/projects?ref=G0200434


Description MRC PhD fellowship
Amount £1 (GBP)
Organisation Medical Research Council (MRC)
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 01/2011
End 12/2014
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They got somebody to do a fellowship for £1. They surely should then have been able to deal with the freedom of information act requests for less than £450. :lol:

But seriously, it is a bit odd to have a figure of £1. I wonder what is going on there.
 
S

Sean

Senior Member
Messages
7,378
Dolphin said:
But seriously, it is a bit odd to have a figure of £1. I wonder what is going on there.
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That might just be a contract or tax law detail. I think something similar applies in Australia. For example, if you gift somebody a car then they need to officially 'pay' you a nominal price for it, and one dollar is acceptable.
 
V

Valentijn

Senior Member
Messages
15,786
Sean said:
That might just be a contract or tax law detail.
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Yeah, nominal amounts can be used to make a contract legally binding. Otherwise doing or giving someone something for free is just a gift, and they can back out at any time.

But it's still very weird for a fellowship. It wouldn't be legal to pay someone so little for work (versus paying them nothing and calling it education), so it has to be for something else. My best guess would be that a contract was involved which wasn't for employment itself - maybe a nondisclosure agreement?

And sometimes, forms just really hate it when you fill in a field with a value of "0". Every year I tell the IRS that I earned $1 in dividends or whatever so I can submit my tax return online :p
 
D

Dolphin

Senior Member
Messages
17,567
Found by @maxwhd on Twitter.

I imagine that the PACE Trial was discussed and not in a neutral way.

http://www.sciencemediacentre.org/cbt-does-it-really-work/
Science Media Centre
September 2, 2016
CBT – does it really work?


Many people are concerned about over-medicalisation and the use of pharmaceutical therapies such as antidepressants. This concern has coincided with a rise in the use of psychological therapies, particularly Cognitive Behavioural Therapy (CBT). However, do we know how strong the evidence for CBT actually is? Is it really just talking, or would that even matter as long as it works? Is the evidence only strong for certain disorders and can it cause harm, even when used correctly?

The SMC invited in three top experts to give an honest appraisal of the evidence, to discuss how CBT fits into the wider picture and to explain the pros and cons of this therapy.

Journalists came along to the Science Media Centre to discuss issues such as:

  • What exactly is CBT and how does it work? Is it just talking?
  • Where do we have robust evidence of CBT working really well?
  • What about issues like placebos and double-blind RCTs – does it matter if we don’t have the same level of rigour as for drugs?
  • Are there concerns about CBT being overused or misused? Can it cause harm? How do we ensure practitioners have sufficient training in its use?
  • How cost-effective is CBT? Are we using it enough?
  • Can we see a future where psychological therapies replace pharmacological ones for many mental illnesses?


Speakers:

Prof. Rona Moss-Morris, Professor of Psychology as Applied to Medicine, King’s College London’s Institute of Psychiatry, Psychology & Neuroscience

Prof. Michael Sharpe, Professor of Psychological Medicine Research, University of Oxford

Prof. Dame Til Wykes, Professor of Clinical Psychology and Rehabilitation, King’s College London’s Institute of Psychiatry, Psychology & Neuroscience
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S

Sean

Senior Member
Messages
7,378
Prof. Rona Moss-Morris, Professor of Psychology as Applied to Medicine, King’s College London’s Institute of Psychiatry, Psychology & Neuroscience

Prof. Michael Sharpe, Professor of Psychological Medicine Research, University of Oxford

Prof. Dame Til Wykes, Professor of Clinical Psychology and Rehabilitation, King’s College London’s Institute of Psychiatry, Psychology & Neuroscience
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Vested interest much?

Sorry SMC, but even your best spin isn't going to cover up this disaster.
 
D

Dolphin

Senior Member
Messages
17,567
People may recall that normal range for physical functioning* was below the entry criteria in the PACE Trial. So you could get worse and be counted as being in the normal range or as was said in some media coverage "back to normal".

*Also fatigue, but that wasn't as big of an issue.

From Peter Kemp:
14233162_1407224339293707_7094396040434876570_n.jpg
 
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