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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 '2021 Cochrane Exercise Therapy Review' started by Lucibee, Feb 13, 2020.

  1. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Examples must be pretty easy to imagine. Anyone being indoctrinated into ignoring symptoms of physical ailments is potentially at risk of harm. What if patients were misled into believing their cancer treatment was not needed? Or their broken leg should still be used to its full limit whilst mending. Some time in the future, when ME/CFS is much better understood, people might similarly cite: What if people with ME/CFS were lured into exercising way beyond their limit ...

    I find it astonishing and appalling that such treatments are below the radar of medical harms. It just gives free reign to charlatans.
     
    Ariel, JemPD, Kitty and 14 others like this.
  2. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

    Messages:
    818
    Location:
    Earth, in a fractal universe
    Entirely relevant @Caroline Struthers @Hilda Bastian
    https://www.s4me.info/threads/compl...nce-underwriting-etc-vs-me.20482/#post-344774

     
    Kitty, Michelle, alktipping and 6 others like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    13,140
    Location:
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    Now 3 office working days to the end of May.
     
  4. Hilda Bastian

    Hilda Bastian Guest Guest

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    Location:
    Australia
    I thought that too - but unfortunately it turns out there's actually one day less, because the 31st is a bank holiday in the UK (and that's where it needs to go online and the email will be sent out). Plus I want it to go online at a time when I'm not asleep. So going public might end up a day or two over.

    PS: Just hit me - that *is* what you meant. Because I was already the day ahead, when I counted 3 it was *with* the 31st.
     
    Last edited: May 26, 2021
    EzzieD, Michelle, alktipping and 7 others like this.
  5. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    624
    Thanks for the update. I just wanted to re-stress the urgency of this review. Trudie Chalder is training health professionals on Long Covid and is making wild claims that exercise is not harmful for ME/CFS or Long Covid.

    https://twitter.com/user/status/1396847147287461888
     
    Sly Saint, Chezboo, JaneL and 32 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    12,290
    Location:
    Canada
    And of course many governments are already using the same evidence base to dismiss Long Covid as a "cultural illness", Cochrane reviews feature prominently in those decisions (to my immense puzzlement). Those consequences are cumulative, more and people are losing more and more to it every day.

    And then there's Garner's weird tall tales being pushed by Michael Sharpe at psychosomatic conferences. The damage done here is incredible and Cochrane features large in justifying it.
     
    JoanneS, Chezboo, ukxmrv and 23 others like this.
  7. Andy

    Andy Committee Member

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    Location:
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    Now less than 14 working hours, the tension is building.....
     
  8. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    820
    Location:
    Oxford UK
    :nailbiting:
     
  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
     
    Kitty likes this.
  10. Hutan

    Hutan Moderator Staff Member

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    26,520
    Location:
    Aotearoa New Zealand
    I had a momentary double-take when I first read this. For the benefit of those not familiar with the colloquial phrase 'just hit me' - it isn't some sort of invitation. It means 'I have just realised'. :)
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Location:
    London, UK
    Where is Dr Who when we need him?
    Cochrane reports may need a Tardis to be read properly.
     
    Hutan, Kitty, Michelle and 10 others like this.
  12. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    820
    Location:
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    It's now her remember ;-) hehe
     
    Kitty, Michelle, Missense and 5 others like this.
  13. Hilda Bastian

    Hilda Bastian Guest Guest

    Messages:
    181
    Location:
    Australia
    :emoji_face_palm: :emoji_joy:
     
    Kitty, Missense, Amw66 and 5 others like this.
  14. Hilda Bastian

    Hilda Bastian Guest Guest

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    181
    Location:
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    I'm looking forward to the "behind the scenes" part of the process being over.
     
    Kitty, Michelle, Missense and 12 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,267
    Location:
    London, UK
    Ah but is it? If a Dr Who is always some time else then there is no particular Dr Who now.
     
    Kitty, Michelle, Missense and 6 others like this.
  16. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

    Messages:
    820
    Location:
    Oxford UK
    haha -you got me!
     
    Kitty, MEMarge, Missense and 5 others like this.
  17. Andy

    Andy Committee Member

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    I can empathise, given how long we the patients have looked forward to it.

    Just over 6 working hours left of May before the revised deadline passes and we move on to the new revised deadline.
     
    Binkie4, Kitty, MEMarge and 10 others like this.
  18. Hilda Bastian

    Hilda Bastian Guest Guest

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    181
    Location:
    Australia
    I am sorry about that. It'll be easier to discuss why it's taken so long soon. And next time I'll know to factor in more time for getting things online - and to note UK holidays.

    Meanwhile...when is midnight on 31 May in Pago Pago? Asking for a friend!! :geek:
     
    Kitty, Sid, Invisible Woman and 9 others like this.
  19. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    3,819
    Location:
    Australia
    About 21 hours after your Australian deadline!
     
    Kitty, Sid, Invisible Woman and 7 others like this.
  20. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

    Messages:
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    Location:
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    ”looking forward” a bit like the way I used to look forward to Dr Who – with my eyes shut, hiding behind my Dad’s armchair.
     
    oldtimer, Binkie4, Kitty and 16 others like this.

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