UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

Joh said:
Priory uses the debate shamelessly to advertise their service – and it's CBT.
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The woman in the picture doesn't look particularly impressed with the tweet either ;) (Neither does she look ill.)

Jonathan Edwards said:
This for me was the one place where the minister showed himself to be a fake.
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I think it shows that he doesn't believe that it is harmful just that some patients don't want it. If he accepted it was harmful he wouldn't be happy with GPs recommending it to vulnerable patients even if they could theoretically refuse it. Shows a real lack of understanding.

Indigophoton said:
I'm not sure if this has been mentioned yet, but I liked the comment by Jim Shannon in the debate, "I believe in miracles, but PACE isn't one of them".

:rofl:
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Me too - this was my favourite bit!
 
Stephen Brine's, the minister's (Parliamentary Under-Secretary of State for Health),
pre-politics career according to Wikipedia includes no medical or science background:
https://en.wikipedia.org/wiki/Steve_Brine
Brine worked as a radio journalist, and when 18 years old was one of the BBC's youngest reporters and producers on BBC Local Radio, before working with BBC Radio Surrey and BBC Southern Counties Radio as well as contributing as a freelance reporter to Radio Five Live.[6] Brine also spent a year working in Chicago with the Tribune Media Group's WGN Radio.[6] He also worked as a business development consultant, and for a golf marketing and publishing business.[6]
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Londinium said:
Ed Davey's story of a constituent being told 'all ME patients are crazy... except you' ties in exactly with an experience I had. A GP told me 'no, you're properly ill with something you got from India. Not like all those women who just won't get out of bed.'
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Ed Davey's constituent was me. The cardiologist actually said "pwme are mad but you're not". He thought he was complimenting me. Ed was shocked.

Really appreciate Ed spending an hour the evening before the debate to get to grips with it. He rearranged his diary to be able to do it so next job is a letter of thanks.
 
The (uncorrected) transcript is already online:
https://hansard.parliament.uk/Commo...4E35-A83B-49FEF0D6074F/METreatmentAndResearch

Carol Monaghan
Interestingly, Professor Sharpe, one of the authors of the PACE trial whom I already mentioned, emailed me this week and told me that my behaviour is “unbecoming of an MP”. I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty. [Hon. Members: “Hear, hear!”] If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?

Gavin Newlands (Paisley and Renfrewshire North) (SNP
I want to say to Professor Sharpe that it is not my hon. Friend’s conduct that is unbecoming; it is his. Sending such emails does nothing for the reputation of the scientific research community, and he should apologise.
 
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And a 3rd mention of Sharpe.

  • Carol Monaghan
    One of those authors, Professor Michael Sharpe, states in his briefing for the debate:

    “Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”

    I will leave hon. Members to make up their own minds about that.
 
And last mention of Sharpe.

Steve Brine
I think the hon. Member for Glasgow North West said in her opening remarks that professionals should welcome research, because evidence-based treatment is ultimately the basis of their training. I welcome such research. I echo what has been said, and on the email that she read out earlier—clearly, I have not seen it and have only heard her reporting of it; I think she will give it to me afterwards—I hope that that will be the second apology received as a result of my remarks today. I look forward to being copied into that.
 
Joh said:
And last mention of Sharpe.

Steve Brine
I think the hon. Member for Glasgow North West said in her opening remarks that professionals should welcome research, because evidence-based treatment is ultimately the basis of their training. I welcome such research. I echo what has been said, and on the email that she read out earlier—clearly, I have not seen it and have only heard her reporting of it; I think she will give it to me afterwards—I hope that that will be the second apology received as a result of my remarks today. I look forward to being copied into that.
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It sounds as if he didn't get who the email was from - the person doing the research! Maybe he is on a steep learning curve.
 
Jonathan Edwards said:
The minister defended the MRC and the procedure of NICE. I will come back to those but I think that was fair. There is no way that the MRC should be asked to fund whatever stuff is proposed for ME and no way that NICE should be influenced by MPs. In certain details he showed an inappropriate deference, yes, but then that is what government ministers always do.
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I think there are two things with the MRC. The first is a governance issue since the MRC signed off on PACE and continued to support it. There head of governance gave evidence in the information tribunal to try to block the release of data. This suggests a degree of incompetence of cover up and this should be addressed. When senior people within the MRC were defending PACE, its methodology and outcome switching then something needs to be done. Maybe that will happen as the research councils merge.

The other thing is that I don't think its enough for the MRC to stand back and say that they have no good proposals. They need to have a strategy to make sure such research areas are filled and that good quality proposals are created. Otherwise it may never happen. Currently they come across as a funding club for academics rather than an organization with a long term view on needs and research directions.
 
Adrian said:
The other thing is that I don't think its enough for the MRC to stand back and say that they have no good proposals. They need to have a strategy to make sure such research areas are filled and that good quality proposals are created. Otherwise it may never happen. Currently they come across as a funding club for academics rather than an organization with a long term view on needs and research directions.
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Exactly this, and I hope, if this hasn't been discussed with Carol Monaghan already, that somebody highlights it with her.
 
Jonathan Edwards said:
The contrast is very interesting. Margaret Mar seem to have walked in to a trap. Clearly the atmosphere of the Lords is different but the fact that absolutely nobody uttered a word in defence of PACE today must mean something.
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I think there was a big lobbying campaign for the Lords debate the various Lords speaking in support of PACE were clearly parroting the defense that the PACE team had given them.
 
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