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Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Discussion in 'PsychoSocial ME/CFS Research' started by Lucibee, Feb 13, 2020.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Last edited by a moderator: Feb 14, 2020
    MSEsperanza, Atle, rainy and 34 others like this.
  2. Andy

    Andy Committee Member & Outreach

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    https://twitter.com/hildabast/status/1228231948700508162
     
  3. Simone

    Simone Senior Member (Voting Rights)

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    This is such good news! Even if the intention with having the independent advisory group was for it to be tokenistic, that would be really difficult with Hilda leading it. And the fact that they appointed Hilda, knowing full well who is and how she’s likely to approach this, also bodes well for their intentions with this process.
     
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  4. Andy

    Andy Committee Member & Outreach

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    https://twitter.com/hildabast/status/1228254161721942018
     
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  5. Andy

    Andy Committee Member & Outreach

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    James Coyne's view of the news.
    Code:
    https://twitter.com/CoyneoftheRealm/status/1228275870969757697
     
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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Maybe it was a good ploy to sit on the fence a while back. Let's hope she slips down the right side!
     
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  7. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I presume your exchange means S4ME will be applying to be recognized as a 'patient advisory group', @Adrian ?
     
  8. wdb

    wdb Senior Member (Voting Rights)

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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    If so, might an S4ME 'Cochrane committee' be set up rather than just one individual being a representative?
     
  10. Andy

    Andy Committee Member & Outreach

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  11. Andy

    Andy Committee Member & Outreach

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    We haven't made any decisions yet, but I think it's safe to say that we see this as an opportunity that we should be involved in, in one form or another.
     
  12. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Good.
     
  13. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Was thinking exactly the same thing. I was rather frustrated by the fence sitting.
     
  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    always the danger of skelfs
     
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  15. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Indeed. Hilda does not come from a science or medical doctor background, she has forged a career focusing on patient/consumer interests first!
     
  16. Caroline Struthers

    Caroline Struthers Established Member (Voting Rights)

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    This is why I don't understand why Hilda didn't push for withdrawal of the review - which is what David Tovey explicitly said he wanted before he left. Having it republished with amendments which water down the enthusiasm but still says that exercise might be an effective treatment for some patients (but sorry we can't tell you which ones) is causing harm to the many people with ME/CFS that are harmed by exercise. It doesn't make sense, apart from in the Cochrane saving face/political sense.
     
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  17. Caroline Struthers

    Caroline Struthers Established Member (Voting Rights)

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    Hilda is a scientist

    Twitter says:-
    Scientist, writer, cartoonist. Blogs Absolutely Maybe (@PLOSBlogs), @BMJ_Latest Statistically Funny on clinical epidemiology, & @MissingSciFaces.
     
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    For the non-Scottish among us:

    skelf
    /skɛlf/
    noun
    SCOTTISH
    1. 1.
      a splinter or sliver of wood.

    2. 2.
      INFORMAL
      a troublesome or annoying person.
     
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  19. Trish

    Trish Moderator Staff Member

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    Hilda Bastian, I hope you have found your way to reading this forum. If so, welcome, and I'm very pleased you are going to be leading this group. As you will see, if you explore the forum, we have a wide variety of members, including patients, carers, scientists, doctors, supporters... with a wide range of views on everything to do with ME, and a willingness to express those views!

    But one thing I think we are all united on is what a disaster for people with ME the whole 'Exercise therapy for ME' has been for 30 years, and continues to be, thanks largely to the power of a small group of doctors and therapists, and some very bad science. Not helped by Cochrane and NICE being so slow to begin to recognise there is a problem.

    I hope the current NICE review, and the new approach by Cochrane will emphatically change their conclusions. I wonder, now you have a defined position in the process for the new review, whether your first move could be to ask that while the new review is under way, the current review could be withdrawn?
     
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    This is very welcome news.

    Lots of work ahead but here's to a process that takes facts into account, shuns bias and ideology and actually cares about patient outcomes. The very premise that exercise is a legitimate treatment for ME is absurd and I hope there is some minimal examination into how the prior process went completely wrong to the point of being hostile to patient welfare.
     
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