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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)

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    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)

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    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)

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    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)

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    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.
     
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  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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  7. chrisb

    chrisb Senior Member (Voting Rights)

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    It opens fine in Edge
     
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  8. Marco

    Marco Senior Member (Voting Rights)

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    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. strategist

    strategist Senior Member (Voting Rights)

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    One of the speakers said she was struck by the number of responses.
     
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  10. SallyC

    SallyC Senior Member (Voting Rights)

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    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.
     
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  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    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
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, Grampian do not look to be exactly on the ball - whichever ball you might fancy.
     
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  13. TiredSam

    TiredSam Moderator Staff Member

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    Opens fine in Edge, Chrome, Firefox and Opera for me.
     
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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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  15. Andy

    Andy Committee Member & Outreach

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    https://www.facebook.com/meactionscot/posts/2255795934741488
     
  16. Gecko

    Gecko Senior Member (Voting Rights)

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    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.
     
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  17. Andy

    Andy Committee Member & Outreach

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    https://www.facebook.com/meactionscot/posts/2257091911278557
     
  18. Trish

    Trish Moderator Staff Member

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    The committee has just started a 5 minute break and then I think will be addressing the ME petition next.
     
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  19. Gecko

    Gecko Senior Member (Voting Rights)

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    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.
     
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  20. Andy

    Andy Committee Member & Outreach

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    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.
     
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