Daisymay
Senior Member
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Where do the NICE guidelines stand if re-analysis of the PACE trial data show the benefits of CBT/GET are not as we've been told?
I think the correspondence between Professor Hooper and Frances Rawle in 2011 sheds some light on this. Professor Hooper had been corresponding with Frances Rawle about PACE. Frances Rawle was, and still is, Head of Corporate Governance and Policy at the MRC. She was also a witness at the tribunal for QMUL.
The excerpt below is taken from the article "Prof Hooper's Reply to MRC, Rawle 26 Jan 2011" which can be found in the catalogue of articles by Margaret Williams and Malcolm Hooper:
http://margaretwilliams.me/2011/hooper-reply-to-mrc-rawle_26jan2011.pdf
"You attempt to justify the MRC’s funding of the PACE Trial by stating:
"there was a lack of high quality evidence to inform treatment of CFS/ME and in particular on the need to evaluate treatments that were already in use and for which there was insufficiently strong evidence from random controlled trials of their effectiveness”.
That is a remarkable admission, since the NICE Clinical Guideline 53 of August 2007 relies upon the pre-PACE Trial “evidence -base” to recommend the use of CBT and GET nationally as the intervention of choice for ME/CFS, yet you state in your letter that there was insufficient evidence for the implementation of this nationwide programme of CBT and GET recommended by NICE in its Clinical Guideline 53.
In other words, on the one hand Professor Peter White was strongly promoting CBT/GET in his submissions to NICE because he asserted that there was sufficient evidence of their efficacy for their implementation across the nation, yet on the other hand he has received millions of pounds of tax payers’ money to carry out the PACE Trial because there was NOT sufficient evidence of the efficacy of the same interventions.
This can only mean that since August 2007 NICE has been promoting interventions and subjecting sick people throughout the nation to a regime for which insufficient evidence exists, a situation that raises yet more legal issues and ramifications, since the correct option for NICE pending the outcome of the PACE Trial was to have recommended the use of CBT and GET “only in research”, not to have issued recommendations for widespread clinical use when evidence of efficacy for those interventions was insufficient at the time the Guideline was published.
This raises the issue of exactly why the Guideline Development Group was so determined to implement nationwide CBT and GET on an insufficient evidence-base."
.........
So, if the PACE data re-analysis does not support the use of CBT/GET then there is clearly insufficient evidence for the NICE guidelines and they should be withdrawn immediately pending an expert review.
I think the correspondence between Professor Hooper and Frances Rawle in 2011 sheds some light on this. Professor Hooper had been corresponding with Frances Rawle about PACE. Frances Rawle was, and still is, Head of Corporate Governance and Policy at the MRC. She was also a witness at the tribunal for QMUL.
The excerpt below is taken from the article "Prof Hooper's Reply to MRC, Rawle 26 Jan 2011" which can be found in the catalogue of articles by Margaret Williams and Malcolm Hooper:
http://margaretwilliams.me/2011/hooper-reply-to-mrc-rawle_26jan2011.pdf
"You attempt to justify the MRC’s funding of the PACE Trial by stating:
"there was a lack of high quality evidence to inform treatment of CFS/ME and in particular on the need to evaluate treatments that were already in use and for which there was insufficiently strong evidence from random controlled trials of their effectiveness”.
That is a remarkable admission, since the NICE Clinical Guideline 53 of August 2007 relies upon the pre-PACE Trial “evidence -base” to recommend the use of CBT and GET nationally as the intervention of choice for ME/CFS, yet you state in your letter that there was insufficient evidence for the implementation of this nationwide programme of CBT and GET recommended by NICE in its Clinical Guideline 53.
In other words, on the one hand Professor Peter White was strongly promoting CBT/GET in his submissions to NICE because he asserted that there was sufficient evidence of their efficacy for their implementation across the nation, yet on the other hand he has received millions of pounds of tax payers’ money to carry out the PACE Trial because there was NOT sufficient evidence of the efficacy of the same interventions.
This can only mean that since August 2007 NICE has been promoting interventions and subjecting sick people throughout the nation to a regime for which insufficient evidence exists, a situation that raises yet more legal issues and ramifications, since the correct option for NICE pending the outcome of the PACE Trial was to have recommended the use of CBT and GET “only in research”, not to have issued recommendations for widespread clinical use when evidence of efficacy for those interventions was insufficient at the time the Guideline was published.
This raises the issue of exactly why the Guideline Development Group was so determined to implement nationwide CBT and GET on an insufficient evidence-base."
.........
So, if the PACE data re-analysis does not support the use of CBT/GET then there is clearly insufficient evidence for the NICE guidelines and they should be withdrawn immediately pending an expert review.