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The Bristol Cable: #MillionsMissing: the campaign for ME equality

Discussion in 'General ME/CFS News' started by Andy, May 10, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    https://thebristolcable.org/2018/05/from-bed-and-the-streets-campaign-for-me-equality/
     
  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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  3. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Why is it always portrayed as if it's just a bunch of ME/CFS patients that believe these therapies to cause harm?

    The American CDC removed CBT and GET recommendations. Countless researchers, among them also psychiatrists, have also been critical of CBT and GET and assert that there is no evidence that either treatment is effective.

    Does that really count for nothing in Europe?
     
    Last edited: May 10, 2018
    ahimsa, Inara, Cheshire and 13 others like this.
  4. alktipping

    alktipping Senior Member (Voting Rights)

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    the british media still won't call it the fraud that it so patently is but then all the people who openly speak about its failings/flaws will not call it a fraud either. very strange if drugs companies did this there would be prosecutions and huge legal suits for compensation considering the adverse effects on patients is global that would be a tremendous nail in the careers/ coffin of these self serving pseudo scientists.
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    The evidence around harms from CBT & GET is pretty weak so it's hard to say anything much with any real confidence.
     
  6. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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  7. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Very true

    My annoyance was more with the ''CBT and GET may benefit some patients'' for which there is no evidence.

    No idea why I phrased it the way I did to be honest. Major brain fart.
     
    ahimsa, Cheshire, alktipping and 3 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Lorna Stephenson (the writer of this article) has been one of the most receptive (and responsive) people. Good to have an ally, particularly in that neck of the woods.
     
    Last edited: Jun 11, 2018
    Dolphin, Inara, Jan and 16 others like this.
  9. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I get a kick out of The Bristol Cable just being in Bristol. I hope it's in the hospital waiting rooms.
     
    Jan, Snowdrop, TiredSam and 11 others like this.
  10. Awol

    Awol Senior Member (Voting Rights)

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    "The plight of ME/CFS sufferers was raised in parliament by Carol Monaghan, MP for Glasgow North West – the first time that the disease had been mentioned officially in UK government." In the context of Millions Missing and calls for government funding of biomedical research, let's never forget the short parliamentary debate early 2011 that prompted the announcement by the MRC of ringfenced funding, instigated from her bed by Jan Laverick with the help of her mother Margaret Laverick and thanks to their then MP Ian Swales.

     
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    sadly though, as the poster of the video points out :
    "As no funding was given in 2010, there is no actual increase in MRC funding into 'CFS/ME' at all. The 2011 £1.5 million grant is simply x2 of what was meant to have been given, because 2010 was missed out. So we are back to the usual £0.8 million per year and there is no 'news'. 90% of MRC funding is given to psychosomatic theories on 'Chronic Fatigue'."
     
  12. Awol

    Awol Senior Member (Voting Rights)

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    I think it was worse than that, in the sense of looking back further than the previous year to previous decades, well described by the ME Analysis videos. Also worth looking at what studies were actually funded, if they have made any impact on NHS treatment, and how much further funding has there been for biomedical research since then, hence the need for the Millions Missing campaign.

     
    Invisible Woman, Trish and alktipping like this.
  13. TiredSam

    TiredSam Moderator Staff Member

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    Now there's an idea ...
     
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  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    andypants, Esther12 and Trish like this.

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