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Science Media Centre CFS/ME factsheet for journalists: The illness and the controversy

Discussion in 'PsychoSocial ME/CFS News' started by Cheshire, Mar 21, 2018.

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  1. Daisymay

    Daisymay Senior Member (Voting Rights)

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    They want us to feel f'cked, part of their ploy, but don't let them win!

    They're running scared, this fact sheet was a different tone from usual I think, full of mis-information and lies but the focus was more on covering their asses I think.

    Let's focus on the paper when it comes out not on this fake news.
     
    Samuel, alktipping, MEMarge and 8 others like this.
  2. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    as the U.K. BPS mafia are so close with the Dutch BPS mafia this must also be linked to the report from the Health Council in case U.K. journos are asking questions about U.K. implications.
     
    alktipping, MEMarge, James and 3 others like this.
  3. Simone

    Simone Senior Member (Voting Rights)

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    No, it’s an “alternative facts” sheet, the likes of which would give Kellyanne Conway a run for her money.
     
  4. Simone

    Simone Senior Member (Voting Rights)

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    I completely agree. PACE may be the GET/CBT’s jewel in the crown, but there is still a large body of similarly (though perhaps not as egregiously) flawed work left standing once PACE has gone. That’s why I wrote this PEM/GET primer, focussing on the flaws in the GET research as a whole, not just GET.
    https://emerge.org.au/wp-content/uploads/2018/02/PEM-GET-Primer-December-2017.pdf
     
    alktipping, Woolie, MEMarge and 24 others like this.
  5. Forbin

    Forbin Senior Member (Voting Rights)

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    I'm having trouble figuring out their priorities...

    Untitled-4.jpg
     
    alktipping, MEMarge, Skylark and 33 others like this.
  6. RuthT

    RuthT Senior Member (Voting Rights)

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    Thank you. Helping to plan #MillionsMission in London with #STOP GET as main message. Can we use Executive Summary & cite reference to primer in a leaflet? Thanks.
     
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  7. Simone

    Simone Senior Member (Voting Rights)

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    Yes! So long as you acknowledge me as author, go for it!
     
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  8. Cheshire

    Cheshire Moderator Staff Member

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    SMC's Expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments

    They've had trouble finding people supporting Sharpe and co.
    Jon Stone's comment is not really over enthusiastic.
    But still standing by his colleagues (and protecting his own business)
    Ponting's one is a clear step back, and supportive of the reanalysis findings. A very different speech from Holgate's.

    And as usual, the "authors' response", more disconnected and unsubstanciated than ever.

    http://www.sciencemediacentre.org/e...-for-chronic-fatigue-syndrome-cfs-treatments/

     
    Last edited: Mar 22, 2018
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  9. RuthT

    RuthT Senior Member (Voting Rights)

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    Thank you.

    Will absolutely reference you whenever we use & give link to full article.
     
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  10. Alvin

    Alvin Senior Member (Voting Rights)

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    My response (if i had the ability) would be however in ME/CFS GET worsens patients physical condition and trying to brainwash them into believing they are not ill is not legitimate medicine nor considered ethical behaviour by most medical systems.
    Telling MS patients to believe they don't have MS would likely lead to an ethics board meeting in many countries much as it would if you told a cancer patient to pretend they don't have cancer and should by extension shun chemotherapy because they are not actually ill.
     
    Last edited: Mar 22, 2018
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  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    May be off topic but this is why countering the narrative is so important
     
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  12. Trish

    Trish Moderator Staff Member

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    So we now have three SMC releases in 2 days.

    ''CFS/ME factsheet for journalists: The illness and the controversy''. here

    ''Reanalysis of the PACE trial'' here

    ''Expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments'' here
     
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  13. Cheshire

    Cheshire Moderator Staff Member

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  14. sea

    sea Senior Member (Voting Rights)

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    As awful as the fact sheet is, I detect a change in the way they’ve framed CBT and GET. Perhaps not quite so willing to blantantly display how they’ve been used in ME/CFS, and sounding much more reasonable in order to claim their critics are the unreasonable ones. The CBT and GET described in the fact sheet are not as they were described in PACE. It’s a considered ploy to note how these are used in other illnesses without saying how differently they are applying them in ME/CFS.
     
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  15. Amw66

    Amw66 Senior Member (Voting Rights)

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    I am hoping that this is not one of the children mentioned pre Christmas :(
     
  16. Alvin

    Alvin Senior Member (Voting Rights)

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    They can reframe in public all they want, as far as we know they are still using the same lies and snake oil in treatments. They still abduct children from their families for forced "treatment", they still lock up adults against their will, they still fight to deny benefits to patients who are disabled. Until this changes its only lipstick on a pig. That what we need to remind the public.
     
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  17. sea

    sea Senior Member (Voting Rights)

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    Absolutely agree. I don’t believe they’ve changed their position at all, they’re just trying to make it sound more reasonable, and we need to make sure the public know exactly what we’re dealing with.
     
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  18. Cheshire

    Cheshire Moderator Staff Member

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    Well, that is a lie, because the type of CBT tested in the PACE trial has nothing to do with the CBT that helps people coping when suffering from other illnesses.

    From their protocol:
    We must fight against this normalisation of their CBT, try to prevent them from sweeping the false illness belief (which seems now very embarrassing) under the carpet, because that was their number one aim, and the major element of the therapy.
     
    Last edited: Mar 22, 2018
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  19. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Jon stones use of CBT in MS to justify it is silly, they have different response to activity and exertion, the MS society Facebook is full of threads on the benefits of exercise. And often when CBT is used for fatigue in other illness it is unfortunately based on the bps model and being used because the fatigue is still medically unexplained. So they might not be suggesting pediatric MS, cancers or kidney disease are psychological but they do assert psychological behavioural factors sometimes causing the fatigue to a degree and being modifiable.
     
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  20. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    I (still) think that in combating it, it is worth pointing out that it is a CBT based on a phobic model, not on a coping/adjusting model. The GET therapy is the same as Graded Exposure Therapy, and the CBT also. (In fact the CBT and GET are ultimately the same therapy, just delivered in slightly different ways.)
     
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