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BBC Radio Scotland: John Beattie show will feature discussion of ME/CFS, 14th Feb 2018

Discussion in 'General ME/CFS news' started by Andy, Feb 13, 2018.

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  1. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    MP - the PACE trial need to be exposed. The patients are so exhausted, in pain, crippled with ME we just don't see them. Missing millions mentioned
     
    ukxmrv, Feb 14, 2018
    #21
    Allele, ConstantlyEvolving, Chezboo and 15 others like this.
  2. Andy

    Andy Committee Member

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    Great summaries @ukxmrv and @Sly Saint :thumbup:

    I thought it was really good, listening live I can't recall anything that I would have wanted to change. Possibly the only thing would be to explain how potentially useless the clinics are in England. There is so much on the subject of ME though that it's impossible to cover everything in less than 30 mins.
     
    Andy, Feb 14, 2018
    #22
    Allele, ConstantlyEvolving, Chezboo and 16 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I think that C Monaghan is on the ball with this; several times when the presenter started veering things off course she pulled it back to PACE. (DR Spence seemed more interested in getting a clinic in Scotland).
    Clearly the letters sent by everyone from here and abroad have helped her see the extent of the problem. Emma also did a great job bringing the subject back on topic and getting over the history and the problems with CBT and GET............... (IMO she did a better job than any of the 'Medical professionals' who have been asked to speak on the subject recently).
     
    Last edited: Feb 14, 2018
    Sly Saint, Feb 14, 2018
    #23
    Allele, AndyPandy, MsUnderstood and 19 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Thank you for summaries! It seems this was very good and I'm glad to hear that Monaghan seems to be in full control. Tuesday's event at the Parliament will be interesting, for sure.
     
    Kalliope, Feb 14, 2018
    #24
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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Kalliope, Feb 14, 2018
    #25
    Allele, ConstantlyEvolving, Chezboo and 11 others like this.
  6. Trish

    Trish Moderator Staff Member

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    I've just listened. Really good.

    Emma Shorter was particularly impressive - made it clear that CBT/GET made her much worse and she was blamed for not trying hard enough. And I though her answer when asked if if affected her mental health was brilliant - she didn't fall into the trap of saying it made her depressed - which could have been used against her by saying 'it's really depression'. Instead she talked about making adjustments and finding a sense of achievement in small things like being able to get her own breakfast and make a cup of tea.

    And I thought the MP was really well clued up. I hope she keeps fighting for us.

    I agree it's a pity they didn't seem to know that the English clinics are mostly using GET, so no may be worse than nothing.
     
    Trish, Feb 14, 2018
    #26
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This is something that bugs me with the ME charities that keep saying more 'specialists' and 'special ME services/clinics' are needed. Why doesn't anyone ask what exactly is SMC (specialist medical care);
    in the PACE trial it was what? Nothing. In the SMILE trial however it was 'treatment' with CBT/GET.

    This fictitous specialist treatment is the same, whether through a GP or a clinic.........ie CBT/GET.

    I think some people mistakenly imagine that it would be a proper clinic that would do all sorts of tests and come up with some kind of effective treatment but unfortunately that is not the case no matter where you are in the UK.
     
    Sly Saint, Feb 14, 2018
    #27
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  8. Sasha

    Sasha Senior Member (Voting Rights)

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    Very impressed with the MP, Carol Monaghan.
     
    Sasha, Feb 14, 2018
    #28
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  9. MeSci

    MeSci Senior Member (Voting Rights)

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    Or in the world?
     
    MeSci, Feb 14, 2018
    #29
    Allele, ukxmrv, ConstantlyEvolving and 7 others like this.
  10. Guest 102

    Guest 102 Guest

    Agree, Emma was excellent throughout - and she handled that question skilfully.
     
    Guest 102, Feb 14, 2018
    #30
    Allele, Skycloud, Trish and 4 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Well no; there seem to be clinics in the US/Canada that do a lot more than just the standard tests, and who are prepared to offer treatments that in the UK they wouldn't dream of/are not allowed to prescribe; eg anti-virals.
    Plus over here, even if there were such clinics, you would usually need to get a referral from your GP.
     
    Sly Saint, Feb 15, 2018
    #31
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  12. Ben McNevis

    Ben McNevis Established Member

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    Ben McNevis, Feb 15, 2018
    #32
    MeSci and Allele like this.
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