PACE Trial and PACE Trial Protocol

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Dolphin

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http://forums.phoenixrising.me/inde...ce-trial-government-committee-responds.49165/
Concerns about public funding for the PACE trial - Government committee responds

In October 2016 the Countess of Mar wrote to the UK Pubic Accounts Committee with her concerns regarding the funding of the PACE trial and she has now received the following response:

http://www.margaretwilliams.me/2017/public-accounts-committee.pdf

or

http://www.margaretwilliams.me/#a2017

“I am particularly concerned at the suggestion that the value for money claimed for NICE-approved NHS treatments may be significantly lower than has been claimed up to this point”.
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I didn't find this response that interesting but perhaps somebody else may find something of interest.
 
Hutan

Hutan

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Dolphin said:
I didn't find this response that interesting but perhaps somebody else may find something of interest.
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I found the letter quite positive. I got the feeling that some people in positions of power are now aware of the issues around PACE and treatment of people with ME. And that they won't be taking the BPS spiel at face value anymore.

I'm not British so I may not know what I am talking about. But it didn't seem like a 'pat-on-the-head fob-off' sort of letter. More 'we are aware of the issues, we won't be doing anything retrospective but will be keeping a close eye on BPS CFS research in the future'.

e.g. It does appear to me a fair question therefore to ask whether MRC, or other funding bodies, have unduly prioritised research into psychological or psychosocial therapies at the expense of research into neurological or pathological causes of ME and/or CFS..... I will ask the National Audit Office to keep in view the balance of future funding awards and, if appropriate, provide further advice in due course.
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I'd be counting that as a win.
 
U

user9876

Senior Member
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4,556
Hutan said:
I found the letter quite positive. I got the feeling that some people in positions of power are now aware of the issues around PACE and treatment of people with ME. And that they won't be taking the BPS spiel at face value anymore.

I'm not British so I may not know what I am talking about. But it didn't seem like a 'pat-on-the-head fob-off' sort of letter. More 'we are aware of the issues, we won't be doing anything retrospective but will be keeping a close eye on BPS CFS research in the future'.



I'd be counting that as a win.
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I think just having people question them is positive. Government ministers have basically repeated the PACE line in the past as if they had sent questions to White or Wessely to be answered. So it is good to have someone at least raise concerns. What is disappointing is it doesn't look like they will take any action but then commons committees have no power.
 
D

Dolphin

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D

Dolphin

Senior Member
Messages
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C4tvDoWXAAEfKVu.jpg large.jpg


From:
https://twitter.com/i/web/status/831880699955314689
 
Esther12

Esther12

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Probably not of much interest to anyone now, but I was just reading a legal analysis of the tribunal ruling that was written on the assumption QMUL would appeal.

This case has the potential to go all the way to the European Court of Human Rights in Strasbourg as it raises fundamental issues on the convention particularly on Article 8 (the right to respect for private and family life).
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I would not have loved another five years of legal wrangling. Also, I suspect that QMUL had some concern about a Streisand effect.

The author of this piece posted a comment on Valerie Elliot Smith's blog, so people may have seen it there, it just hasn't been linked to here.

David Bowden permalink
August 17, 2016 19:01
Sorry to hear you have ME. I have read the FTT decision with interest. I have written an analysis piece on it. It is here: http://ewriter.eu/articles/ClinicalTrialData.pdf The views are entirely my own. It seems the case has become quite bloated and if it is to go to the UT then there needs to be focus on just the anonymisation issue. Run properly there are good prospects of overturning the majority FTT decision.
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BruceInOz

BruceInOz

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Esther12 said:
I think that White was a good choice to explain the range of oppinions that there are on the role of psychiatry in the management of CFS.
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If you only ever acknowledge the existence of one side of a debate I suppose you can convince yourself that that narrow view actually represents the whole range!
 
Kati

Kati

Patient in training
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I suspect they are all feeling under pressure now that good science is booming from all around the world, now that the truth about PACE is uncovered. They will attempt many push backs, which of course should and will be countered in several ways.
 
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