Dolphin
Senior Member (Voting Rights)
SNP MP secures debate on controversial DWP-funded ME trial
http://www.carol.monaghan.scot/2018/02/07/pace-trial/
http://www.carol.monaghan.scot/2018/02/07/pace-trial/
It also has knock-on consequences for later state pension entitlement, because only certain DWP sickness payments accrue National Insurance credits, and are much harder to get if mis-classified as mental health.I guess with the political stuff there can be a direct significance in whether CFS is classed as a mental health issue though (in terms of the DWP, insurance companies, etc).
A Tory MP replied to this quoting that their research on a sample of applicants had shown something quite different (ie most applicants were happy with the PIP process). He tried to imply that modern social media responses would not give reliable input. What he actually did was demonstrate how out of date he is.
Charles Shepherd from The ME Association and infectious diseases consultant Dr. William Weir had a meeting with Carol Monaghan yesterday. Here is a recap of the meeting and what they covered. It also says that it is likely the debate will be recorded by parliamentary TV.
The ME Association: Westminister Hall Debate: The PACE trial and its effect on people with ME - A meeting with Carol Monaghan MP
Charles Shepherd from The ME Association and infectious diseases consultant Dr. William Weir had a meeting with Carol Monaghan yesterday. Here is a recap of the meeting and what they covered. It also says that it is likely the debate will be recorded by parliamentary TV.
The ME Association: Westminister Hall Debate: The PACE trial and its effect on people with ME - A meeting with Carol Monaghan MP
As I understood it, these were items covered on yesterday's meeting, but that PACE will be main subject at Westminster Hall.I think it would be a mistake for Carol to raise most of that stuff.
When there was a House of Lords debate on PACE it was clear that several members had been heavily briefed by the PACE team leading to them making inaccurate statements as the accepted all the spin.
I would expect similar this time but with peer reviewed criticism now published its harder for QMUL to do such spin. It would be good to force the higher education minister to give a statement about QMUL spending so much money to keep data and trial results private - it seems like a misuse of public funds. And we should remember than there is still unpublished data from PACE (step test, individual dimensions of the EQ5d) as well as more individual patent data where an analysis could allow for better understanding of questions around subjective outcomes,
As I understood it, these were items covered on yesterday's meeting, but that PACE will be main subject at Westminster Hall.
I wonder if they will still be able to find people willing to promote PACE's spin? What would be in it for a career politician at this point?
If we've got a chance to challenge someone from the Ministry of Health on the specific problems with the PACE trial there's no way it would be a good idea to start talking about "lack of proper multidisciplinary NHS hospital-based services", treating with antivirals, or mitochondria issues.
I suspect the point of mentioning the various physiological things that CS lists was to illustrate that ME is not psychological, since the assumption that it is is a key flaw in the logic of PACE.Charles Shepherd said:We covered the background to, and problems with, the PACE trial in some detail – as well as linking in research into mitochondrial dysfunction, exercise physiology (e.g. the research involving the two-day cardiopulmonary exercise test by Van Ness et al in the USA) and how inappropriate aerobic exercise exacerbates symptoms.
I suspect the point of mentioning the various physiological things that CS lists was to illustrate that ME is not psychological, since the assumption that it is is a key flaw in the logic of PACE.
I think some in the Lords had more of an interest in that they are part of that medical community. I think Lord Winston was one. But not sure about MPs apart from the doctor who heads the health select committee who may be supportive of the BPS approaches.
I doubt the DWP would have thought it worth contributing to the cost of PACE had they not thought it could yield a cure for ME, and thus get people off benefits. The DWP have apparently not paid towards any other clinical trials. They were keen to be involved based on the assumption that ME is psychological, and that CBT and GET might fix it.I don't think that assumption [that ME is psychological] is a key flaw in the logic of PACE,
Since taxpayer money, and a government department, were so directly involved in PACE, I think pointing out that the basic premise about the illness on which the trial was based is completely flawed is pretty relevant when talking about it to MPs.
I take your point @Esther12, although I didn't think there was still debate about whether ME is physiological amongst those who've actually looked at the evidence objectively.