PACE Trial and PACE Trial Protocol

[Dolphin]

4) Morbid obesity (body massindex [BMI] > 40).
p.146

was an exclusion
http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf

 

[Dolphin]

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”.

I didn't find this response that interesting but perhaps somebody else may find something of interest.

 

[Hutan]

I didn't find this response that interesting but perhaps somebody else may find something of interest.

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.

I'd be counting that as a win.

 

[Barry53]

@Hutan. That is also the impression I got. I am British.

 

[user9876]

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.

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.

 

[Dolphin]

A TRAVESTY OF SCIENCE AND A TRAGEDY FOR PATIENTS: QUOTABLE QUOTES CONTINUED 2006 – 2016
This document is in 4 sections: Professors Wessely, White, Sharpe and the PACE Trial
Compiled by Margaret Williams
17th December 2016

http://www.margaretwilliams.me/2017/quotable-quotes-continued.pdf

or
http://www.margaretwilliams.me/#a20171

Thread:
http://forums.phoenixrising.me/inde...-of-science-and-a-tragedy-for-patients.48810/

 

[Dolphin]

From:

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

 

[Dolphin]

https://twitter.com/i/web/status/832938802259701760

 

[Solstice]

Who is @openmylab?

 

[Dolphin]

Who is @openmylab?

☆●°선영
@openmylab
Tech enthusiast #Millennial #VR#Gaming #HealthApps #ClinicalData#HealthIoT #Biosensors #Biostatistics#Bayes #DataMining

soⓂewhere
http://www.openmylab.com/open-access-virtual
Joined October 2015

 

[Dolphin]

For what it is worth

https://twitter.com/i/web/status/833324596115890176

 

[A.B.]

View attachment 19552

Some of these provoke a WTF reaction on my part. Doctors declining patient randomisation?

 

[Esther12]

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).

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.

 

[Tom Kindlon]

https://twitter.com/i/web/status/835813812007763969

 

[Esther12]

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.

 

[BruceInOz]

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.

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!

 

[Esther12]

Amongst true experts there's a clear consensus that...

 

[Valentijn]

Now if only anyone cared about Peter White's Latest Opinions Though the title is pretty funny - he's not even trying to pretend it's science anymore. Just ... opinions

 

[Kati]

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.

 

[Comet]

"Chronic Fatigues Syndrome"?