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Backbench Business Committee for next Parliament debate

Discussion in 'General ME/CFS News' started by Eagle, Oct 23, 2018.

  1. Eagle

    Eagle Established Member

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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Is it a discussion about what to debate? Will she be putting ME/PACE forward?
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My understanding from the meeting yesterday is that this is about bidding for a slot and maybe fixing a time for a debate in the House itself. The intention is to focus on under-resourcing of ME research and treatment and discontinuation of potentially harmful treatments rather than PACE.
     
  4. Trish

    Trish Moderator Staff Member

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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    :woot::woot::woot:
     
  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Is there anyway the APPG could be reformed. What struck me at the last meeting was that there was a fair amount of repetition of points and also that whilst some MPs were very caring there was room for increasing knowledge not just about ME but the politics and care, research, funding side of it. Having a forum where MPs and charity representatives can meet beforehand would surely amount to a more effective debate with other MPs who will be less informed and perhaps resistant to challenge the medics establishment who are supposed to get things running Nicely on all fronts and the APPG could ensure follow up. MS has an APPG and it seemed enough MPs do care about ME and If there’s actually specific calls for action perhaps the APPG could feel more effective than the previous versions.
     
    ladycatlover, mango, inox and 4 others like this.
  7. EspeMor

    EspeMor Established Member (Voting Rights)

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    Excellent news! The meeting yesterday was really productive and Carol was in superb form. Crossing fingers and toes!
     
  8. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    I understand that applications for debates need to be lodged to the Committee by a Thursday, to be heard the following Tuesday.

    No sign of Carol in today’s meeting unfortunately. Will watch out next week.
     
  9. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    The proceedings became "private" after a while and I couldn't see any sign of Carol in them
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Carol did mention something about being too late for Tuesday although it was not clear what.
     
  11. Trish

    Trish Moderator Staff Member

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    I added it for today, but have removed it again, since it didn't happen.
     
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    upload_2018-10-24_12-20-6.jpeg

    A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, met at the request of #MEAction. Our UK coordinator, Espe Moreno, was present at this meeting.

    https://www.meaction.net/2018/10/24...rliament/?mc_cid=9a38d1f35b&mc_eid=c1fdea04b1
     
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Here's a chance to give Carol Monaghan a thumbs up and/or an appreciative comment.
     
  14. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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  15. Eagle

    Eagle Established Member

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  16. SallyC

    SallyC Senior Member (Voting Rights)

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    I thought it went well. The Committee did not question the need for the debate which they seem to do with a lot of applications. The fact that Carol brought up the NICE guideline committee was great. Now it seems we just wait to be allocated the slot, fingers crossed it's soon.
     
    Graham, ladycatlover, Amw66 and 19 others like this.
  17. Lucibee

    Lucibee Senior Member (Voting Rights)

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  18. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Watched the clip on Facebook. Glad they’re actually going in for aims not just mores “awarwnessl . What will the aims be ? I’d like as much focus on the scandals of severe ME care, Medical education, research funds as PACE. it’s great the MPs care enough to intervene.,I still think a formal parliamentary grouping now, such as reinstating the APPG would make sense now. MPs need to be able to discuss with charities not just rely on anecdotes and in depth knowledge is key to moving forward meaningfully, eg referring critically to NICE yet not knowing when they were going to be published /renewed, which I think the question was.
     
    JoanneS, ladycatlover, Amw66 and 12 others like this.
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I thought it was absolutely bloody marvellous :D
    got just about everything in, PACE, 60% NICE committee being PACE supporters, powerful people in medical establishment, GET being harmful, need to make sure this guideline is right.

    Only thing was issue of deadline? I would have thought that with regards the NICE committee that it is quite urgent as (if I read the NICE protocol correctly) once they start committee meetings the committee cannot be added to/changed(?)
     
    JoanneS, Hutan, Suffolkres and 20 others like this.
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think discontinuation of GET, prevention of any further unjustified care orders on children, GP education, and rules for commissioning groups providing a real service.
     
    EzzieD, Graham, ladycatlover and 21 others like this.

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