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Petition: Review treatment of people with ME in Scotland

Discussion in 'Petitions' started by Emsho, Apr 26, 2018.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,261
    Well done @Emsho and team. You seem to have hit the spot !
    Thanks.
    Just need the whole GIRFEC/ data sharing / named person issue for kids hit on head now too...
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,269
    Location:
    London, UK
    Now here is something interesting @Emsho and all. The Scottish Parliament website carries all the public submissions relating to the debate but of all of them mine is the only one that is now corrupted and unreadable!

    I think it would only be fair if it was restored to readability.
     
    Amw66, NelliePledge, rvallee and 3 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    I think you also deserve a wee dram of your favourite tipple:D
     
    MEMarge, MSEsperanza and Trish like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,269
    Location:
    London, UK
    I spoke to a nice Scottish lady in Holyrood and it seems my file opens in Chrome so I probably do not need to start conspiracy theories. I probably just sent them an old style PDF.

    I used to drink the Macallan but I found it went down too quick and I stick to champagne now.
     
    MEMarge, Amw66, MSEsperanza and 3 others like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,269
    Location:
    London, UK
  7. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    It opens fine in Edge
     
    MSEsperanza likes this.
  8. Marco

    Marco Senior Member (Voting Rights)

    Messages:
    277
    I largely keep out of these discussions but it seems to me that, if it is accepted that current intervention strategies (CBT/GET) are at best useless and that existing resources could be 'repurposed' or lost then the lack of effective alternatives leaves us with a dilemma.

    What may be the best we can hope for would be to 're'-instate a model which had been used in Belfast City Hospital but has now long been discontinued (I believe). Basically, those with a tentative GP diagnosis of ME/CFS were referred to s specialised unit at the hospital that ran a comprehensive bank of tests to exclude other conditions such as diabetes or cancer that can manifest initially as fatigue. An all clear for other conditions would result in referral back to the GP with a diagnosis of ME/CFS as likely (for what that's worth).

    Maybe not what we would ideally wish for but better than nothing and much better than the status quo.
     
  9. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,234
    One of the speakers said she was struck by the number of responses.
     
    Simone, MEMarge, MSEsperanza and 2 others like this.
  10. SallyC

    SallyC Senior Member (Voting Rights)

    Messages:
    216
    Thank you to everyone involved in the submissions, the personal accounts are harrowing but necessary reading for the committee. The ME Action response dealt with all the issues that made me angry in the NHS submissions.
     
    NelliePledge, MSEsperanza and Trish like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,142
    Location:
    UK West Midlands
    Grampian letting the FND cat out of the bag there and they are so blinkered they don’t even realise what they’ve done. #MEdeniers
     
    MEMarge, rvallee and Inara like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,269
    Location:
    London, UK
    Yes, Grampian do not look to be exactly on the ball - whichever ball you might fancy.
     
    MEMarge, rvallee and NelliePledge like this.
  13. TiredSam

    TiredSam Committee Member

    Messages:
    10,482
    Location:
    Germany
    Opens fine in Edge, Chrome, Firefox and Opera for me.
     
    Trish and MSEsperanza like this.
  14. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
  15. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Code:
    https://www.facebook.com/meactionscot/posts/2255795934741488
     
  16. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    262
    Location:
    England
    Just boosting this as happening tomorrow morning!

    Jeane Freeman, Scottish Cabinet Secretary for Health and Sport, will be giving evidence on ME to the petitions commitee. Should be fascinating to hear what she says, the questions the committee asks her, and hopefully what she will be looking to do about ME in Scotland.

    #MEAction Scotland's best estimate is that it'll start around 10am or 10:30am. I'll try to remember to post here when it does, but rather busy day tomorrow!

    Watch live here: https://www.scottishparliament.tv/

    @meactionscot will be tweeting about it through the morning too.
     
    Inara, MEMarge, MSEsperanza and 4 others like this.
  17. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Code:
    https://www.facebook.com/meactionscot/posts/2257091911278557
     
  18. Trish

    Trish Moderator Staff Member

    Messages:
    51,866
    Location:
    UK
    The committee has just started a 5 minute break and then I think will be addressing the ME petition next.
     
    MEMarge and Andy like this.
  19. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    262
    Location:
    England
    Starting now!

    Watch Live:
    Direct link to committee room 2: https://www.scottishparliament.tv/channel/committee-room-2

    Watching Johann Lamont and Jeane Freeman debate the previous petition on MRI scans for Ocular Melanoma, I'm rather impressed by both of them!
    Solid questioning from Johann Lamont in particular, am sure she'll do the same for ME.
     
    MEMarge, Trish and Andy like this.
  20. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Paraphrasing, "Action for ME will be creating educational materials for GPs in Scotland, including webinars". I hope that's nothing like their Toolkit for Professionals that has been looked at recently.
     
    Hutan, Inara, TiredSam and 4 others like this.

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