1. Click here Guest, to read the 'News In Brief' from w/c 10th Dec.
    Dismiss Notice

UK 7 June 2018 | MSPs discuss ME treatment on Holyrood Live

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

  1. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,615
    Location:
    UK
    https://www.bbc.co.uk/news/live/uk-scotland-scotland-politics-44355292

    There are four items on the summary of what will be discussed, and the first is:

    1. The petition committee takes evidence from a young ME sufferer calling for a review of treatment
    I think there might be another thread on this on the forum but thought this event should have its own thread (partly so that it can have a calendar entry).
     
  2. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    1,179
    Likes Received:
    7,043
  3. Simon M

    Simon M Senior Member (Voting Rights)

    Messages:
    147
    Likes Received:
    2,716
    Location:
    UK
    Chris Ponting will be at the event (he’s based at Edinburgh University).
     
  4. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,615
    Location:
    UK
    Good to see him supporting all these things. :thumbup:
     
  5. Emsho

    Emsho Established Member (Voting Rights)

    Messages:
    26
    Likes Received:
    346
    @Sasha thanks for posting!

    It's being recorded live by the BBC for Holyrood live, so folks should be able to watch it from the link in first post.

    Scottish Parliamentary researchers have prepared a briefing for the committee members, which they will read beforehand, this can be viewed here: http://www.parliament.scot/ResearchBriefingsAndFactsheets/Petitions briefings S5/PB18-1690.pdf

    I'm doing a 5 minute opening statement, have spend the day desperately trying to cut the speech down to this length- trying to remind myself that I can't fit in everything!

    @Simon M, we met Prof Ponting a few months ago and he's been wonderful, we feel very lucky he's coming with us. And btw great work by you and him on getting the PhD funding!

    Edit: I am so brainfogged from preparation right now so really hoping this post makes sense:confused:
     
    Flying Dutchman, Inara, Ravn and 22 others like this.
  6. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,615
    Location:
    UK
    Hi @Emsho - thanks for the info, and good luck for tomorrow. Take it easy! :)
     
  7. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,615
    Location:
    UK
    A bump for this, which is on today.

    Do we know what time it starts?
     
    dangermouse and Andy like this.
  8. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,615
    Location:
    UK
    I didn't realise Chris Ponting would be giving evidence! :thumbup:

    It's streaming now - they're talking about various petitions but not the ME one yet.
     
    dangermouse, Simon M and Andy like this.
  9. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,615
    Location:
    UK
  10. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,615
    Location:
    UK
    @Emsho, you were brilliant! One of the MPs mentioned 'leadership and courage' and you just demonstrated that in spades. Your presentation at the beginning was so brave, eloquent and moving.

    Thanks so much for doing this for all of us. I hope you don't get too much PEM payback!
     
    Inara, Ravn, Anna and 17 others like this.
  11. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    2,462
    Likes Received:
    17,615
    Location:
    UK
    For anyone who didn't see this, it will be well worth watching the playback.

    Chris Ponting stuck a polite boot into the PACE trial more than once, and did an excellent job. In future, I'd like to see the conflict between the objective and subjective outcomes in PACE played up more - I think they're really telling, especially for a lay audience who might struggle with the whole 'nonblinded' thing.

    Chris mentioned the 20-fold discrepancy in research funding between ME and MS - very telling. :thumbup:

    The whole thing seemed very well received by the MSPs present, and there were some good questions. I lost concentration at the end when the 'what next' was being discussed o_O so I don't know what the upshot was, but it sounded as though things were going to be taken forward.
     
    Inara, Ravn, Anna and 10 others like this.
  12. Andy

    Andy Committee Member

    Messages:
    4,354
    Likes Received:
    31,902
    Location:
    Hampshire, UK
    Now going to start a long stream of screenshots of the BBC's live text coverage of the debate. I'll do my best to keep them in chronological order.

    Screen Shot 2018-06-07 at 11.10.17.png
    Screen Shot 2018-06-07 at 11.10.03.png
    Screen Shot 2018-06-07 at 11.09.42.png
     
    Last edited: Jun 7, 2018
    Binkie4, TiredSam, Inara and 14 others like this.
  13. Andy

    Andy Committee Member

    Messages:
    4,354
    Likes Received:
    31,902
    Location:
    Hampshire, UK
  14. Andy

    Andy Committee Member

    Messages:
    4,354
    Likes Received:
    31,902
    Location:
    Hampshire, UK
  15. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    1,179
    Likes Received:
    7,043
    Thank you @Emsho ; I hope that payback is not bad
    I will watch later - amazing advocacy:party::trophy@
     
    Inara, Ravn, Anna and 10 others like this.
  16. Andy

    Andy Committee Member

    Messages:
    4,354
    Likes Received:
    31,902
    Location:
    Hampshire, UK
  17. Andy

    Andy Committee Member

    Messages:
    4,354
    Likes Received:
    31,902
    Location:
    Hampshire, UK
  18. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    1,153
    Likes Received:
    9,522
    Thanks to all involved, especially @Emsho. :thumbup:
     
  19. Andy

    Andy Committee Member

    Messages:
    4,354
    Likes Received:
    31,902
    Location:
    Hampshire, UK
    Inara, Skycloud, andypants and 11 others like this.
  20. Andy

    Andy Committee Member

    Messages:
    4,354
    Likes Received:
    31,902
    Location:
    Hampshire, UK
    Facebook post from MillionsMissing Scotland
     
    Inara, adambeyoncelowe, Anna and 9 others like this.

Share This Page