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

Discussion in 'General ME/CFS news' started by Sasha, Jun 6, 2018.

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Page 13 of 22
  1. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

    Messages:
    155
    Agent Sharpe is becoming an important ally I see!! Who is going to set up the indiegogo campaign for him to continue his current work on dismantling the psycho-babble madhouse from within?
     
    Rick Sanchez, Jun 21, 2018
    #241
    MEMarge, janice, Woolie and 15 others like this.
  2. Sbag

    Sbag Senior Member (Voting Rights)

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    472
    I wonder if it's possible to ask for a copy of the letter
     
    Sbag, Jun 21, 2018
    #242
    Invisible Woman likes this.
  3. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    519
    The woman in the picture doesn't look particularly impressed with the tweet either ;) (Neither does she look ill.)

    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.

    Me too - this was my favourite bit!
     
    Tia, Jun 21, 2018
    #243
    MEMarge, adambeyoncelowe, janice and 10 others like this.
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Tom Kindlon, Jun 21, 2018
    #244
    MEMarge, Sly Saint, adambeyoncelowe and 23 others like this.
  5. LightHurtsME

    LightHurtsME Senior Member (Voting Rights)

    Messages:
    122
    Location:
    UK
    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
     
    Last edited: Jun 21, 2018
    LightHurtsME, Jun 21, 2018
    #245
    MeSci, adambeyoncelowe, Woolie and 5 others like this.
  6. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,581
    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.
     
    Binkie4, Jun 21, 2018
    #246
    MEMarge, Forestvon, MeSci and 41 others like this.
  7. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    943
    Location:
    Germany
    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.
     
    Last edited: Jun 21, 2018
    Joh, Jun 21, 2018
    #247
    MeSci, Sly Saint, adambeyoncelowe and 26 others like this.
  8. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    943
    Location:
    Germany
    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.
     
    Joh, Jun 21, 2018
    #248
    MeSci, Sly Saint, adambeyoncelowe and 22 others like this.
  9. large donner

    large donner Guest

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    1,214
    Last edited: Jun 21, 2018
    large donner, Jun 21, 2018
    #249
    MEMarge, adambeyoncelowe, Woolie and 9 others like this.
  10. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    943
    Location:
    Germany
    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, Jun 21, 2018
    #250
    MEMarge, Sly Saint, adambeyoncelowe and 19 others like this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    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.
     
    Jonathan Edwards, Jun 21, 2018
    #251
    MEMarge, MeSci, adambeyoncelowe and 20 others like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    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, Jun 21, 2018
    #252
    adambeyoncelowe, Woolie, Trish and 2 others like this.
  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Tom Kindlon, Jun 21, 2018
    #253
    MEMarge, adambeyoncelowe, janice and 12 others like this.
  14. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,563
    Location:
    UK
    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, Jun 21, 2018
    #254
    MEMarge, adambeyoncelowe, janice and 23 others like this.
  15. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,563
    Location:
    UK
    The concerning funding body is the NIHR which is funding Crawley's work and funds her as a senior fellow.
     
    Adrian, Jun 21, 2018
    #255
    MEMarge, adambeyoncelowe, janice and 8 others like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,851
    Location:
    UK West Midlands
    despite him being a fan of Unrest I doubt he realises that the PACE folks are best mates with Per Fink
     
    NelliePledge, Jun 21, 2018
    #256
    MEMarge, adambeyoncelowe, Woolie and 5 others like this.
  17. Andy

    Andy Committee Member

    Messages:
    23,034
    Location:
    Hampshire, UK
    Exactly this, and I hope, if this hasn't been discussed with Carol Monaghan already, that somebody highlights it with her.
     
    Andy, Jun 21, 2018
    #257
    adambeyoncelowe, janice, Woolie and 9 others like this.
  18. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,563
    Location:
    UK
    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.
     
    Adrian, Jun 21, 2018
    #258
    MEMarge, adambeyoncelowe, janice and 12 others like this.
  19. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,570
    Location:
    Norway
    Is today's event typically something that the media will cover? Could we expect some articles about the debate?
     
    Kalliope, Jun 21, 2018
    #259
    MEMarge, MeSci, adambeyoncelowe and 7 others like this.
  20. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,851
    Location:
    UK West Midlands
    no constituent casework to provide live examples that things were badly wrong
     
    NelliePledge, Jun 21, 2018
    #260
    MEMarge, Forestvon, adambeyoncelowe and 7 others like this.
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