Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery

Discussion in 'Latest ME/CFS Research' started by AndyPR, Aug 11, 2017.

  1. AndyPR

    AndyPR RIP PR :'(

    Full text available at http://www.mdpi.com/2076-328X/7/3/52
     
    suseq, Artstu, Dolphin and 53 others like this.
  2. A.B.

    A.B. Senior Member

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    Wow this is so good.
     
  3. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Excellent. Thank you @Mark Vink .

    @charles shepherd can this be pointed out to NICE? And to the NHS who are funding the British trial on the basis of a false claim that the Dutch study was a success. It would be brilliant if the Crawley trial could be halted on the basis of this paper, but I guess that's too much to hope.

    Edit to add. Thanks also to @docsimsim . I apologise for not realising you were also a member of PR, so could be thanked here.
     
    Last edited: Aug 11, 2017
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  4. docsimsim

    docsimsim

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    Erm and me, I am co author. Thank you!
     
    Last edited: Aug 11, 2017
  5. docsimsim

    docsimsim

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    Thank you for sharing this here. Myself and Mark both very severe ME sufferers nearly killed ourselves writing this from our sick beds. Please share far and wide
    Ty
    Simin
     
    Last edited: Aug 11, 2017
  6. A.B.

    A.B. Senior Member

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    Sorry to hear this. You did an outstanding job.
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I had not picked up where the 63% and 8% actually came from when Dr Crawley quoted these as what the trial she was about to do was bound to confirm.

    The whole sham business of these adolescent studies is totally unethical. I have not written that down before but I do now.

    It also highlights the arrogance of people like Macleod who ridicule patient researchers.
     
  8. docsimsim

    docsimsim

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    TY
     
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  9. dangermouse

    dangermouse Senior Member

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  10. Daisymay

    Daisymay Senior Member

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    Yes indeed, sincere thanks to you both, take care x
     
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  11. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Sincere and humble apologies, @docsimsim . I only mentioned Mark Vink because I recognised his name as a member of PR. I did not realise you were a member too. Thank you for your brilliant work on this paper.
     
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  12. Jan

    Jan Senior Member

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    Many thanks for your amazing work @docsimsim and @MarkVink

    Wishing you both some peace and much needed rest after your amazing efforts, and obviously hoping the relapse is as short as possible. Take care :hug:
     
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  13. docsimsim

    docsimsim

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    No need to apologise. I'm often too unwell to post on here but very grateful to see this review shared here. As you know, as we speak £1 million of NHS funds is being spent to replicate a trial which has so many flaws it should never have gone ahead, let alone be replicated. It's just easy money for a group of anti science psychs :(
    Regards
     
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  14. anni66

    anni66 mum to ME daughter

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    As a mother of an adolescent with ME I sincerely thank you both for your dedicated hard work. Unfortunately this age group tends to have an inordinate focus on it being " in your head". CBT seems to be deployed in much the same way as UK continues to have French as the main second language taught at school - not because it is of any particular use, but because we have a lot if teachers trained to teach it.
     
  15. docsimsim

    docsimsim

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    TY Jan xx
     
  16. Luther Blissett

    Luther Blissett Senior Member

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    What a well written and informative paper, many thanks. I hope that it has some good effect and hope to use it in raising questions.

    Apart from the importance, I also appreciate the effort and thought to make it layman friendly and the clarity of presentation.
     
  17. lilpink

    lilpink Senior Member

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    Ditto :) Excellent!
     
  18. HowToEscape?

    HowToEscape? Senior Member

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    Thank you for doing this! Many (err, most) of us are just trying to stay above metaphorical water as we can't produce an income & do the background tasks of living, much less be effective activists. We need people like you to speak for us, bc when we talk, no one listens.
     
  19. Dolphin

    Dolphin Senior Member

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    I'm reading this now. It makes a lot of good points. Thanks to the authors for the effort that they put in.

    One small correction I have just come across:
    Reference 47 refers to the SF-36 physical functioning subscale. That is not the same as the Physical functioning (Child Health Questionnaire).



    The former has 10 questions, the latter nine:
     
  20. Barry53

    Barry53 Senior Member

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    Hmm, I wonder who they might be then. Belief in one's improvement at best means supportive CBT may have helped. "Same as actual improvement" ... !!!
     

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