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Open Letter to the Chief Executive of Action for ME about the AfME web page on Graded Exercise Therapy

Discussion in 'Open Letters and Replies' started by Trish, Oct 20, 2019.

  1. Trish

    Trish Moderator Staff Member

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    Following discussion on this thread I have now sent the following personal letter to Sonya Chowdhury, Chief Executive of the UK charity Action for ME about their current web page of advice about Graded exercise therapy. I will post any response I get on this thread.

     
    Remi, ArtStu, sea and 48 others like this.
  2. Barry

    Barry Senior Member (Voting Rights)

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    Excellent Trish ... you're a star :).
     
    Remi, Anna H, MEMarge and 19 others like this.
  3. Starlight

    Starlight Established Member (Voting Rights)

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    Thank you Trish. Your letter is so good and explains so clearly the harm caused by GET and the reality of life with ME. It must have taken an enormous amount of your time and energy to put it all together. I really appreciate it. Thank you for this and for all that you do.
     
  4. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Excellent Thankyou.
     
  5. Trish

    Trish Moderator Staff Member

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    :)
    Once I start something like this I have to finish it and send it or I don't sleep much. Now it's done I'll probably need to:asleep: hibernate for a bit.
     
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  6. Ravn

    Ravn Senior Member (Voting Rights)

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    I second that unreservedly. And add that it is an excellent example of constructive criticism. I hope it will be received in an equally constructive manner.
     
  7. ProudActivist

    ProudActivist Senior Member (Voting Rights)

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    This is an amazing job! I hope they use your text.
     
    Ravn, Barry, MSEsperanza and 14 others like this.
  8. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thank you Trish.
    Succinct, easily understood and non ambiguous.
    That it should be necessary is both concerning and sad. Let's hope that the constructive criticism is received in the spirit in which it is intended and changes are made asap.

    ETA spelling
     
    Last edited: Oct 21, 2019
    Ravn, MSEsperanza, Anna H and 10 others like this.
  9. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Really excellent Trish, thanks very much for doing this, now rest and pace!
     
  10. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Well done. It's the perfect letter. You are polite, recognise the good things they do, explain what concerns you, and offer a draft to replace the current text.
     
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  11. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    I guess you've not received a response from Chowdhury yet @Trish?

    I'm now eager to see how / if she replies.
     
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  12. Trish

    Trish Moderator Staff Member

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    All I've had so far is the automated email reply saying she would be out of the office for a few days.
     
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  13. Trish

    Trish Moderator Staff Member

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    Reply from Sonya:

     
    MyalgicE, ladycatlover, sea and 36 others like this.
  14. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Seems like your letter is a success @Trish - congrats on job well done.
     
  15. Trish

    Trish Moderator Staff Member

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    I am concerned about this bit:

    This seems to imply they won't come out clearly in favour of pacing.

    I shall reserve judgement until the new management and treatment pages are published on their website.
     
    MyalgicE, ladycatlover, Ravn and 18 others like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    yes, good work @Trish

    But it should not be up to individuals to point out glaringly obvious misinformation to the largest UK ME charity.

    that has always been their argument for putting out information on things like LP, Gupta etc as well as CBT and GET in the past.
    One of the problems with this is what they consider is the 'best available scientific evidence'(?)
     
    Last edited: Oct 30, 2019
    MyalgicE, ladycatlover, Ravn and 16 others like this.
  17. JemPD

    JemPD Senior Member (Voting Rights)

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    indeed.

    But I still think this was really worth doing @Trish , and done very well too. Thank you!
    At least the reply takes what you've said seriously, and isn't a patronising dismissal. I don't hold out a great deal of hope for AfME tbh, but even if it only makes them consider your points as they update, it was well worth doing.
     
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I had forgotten that before their last statement on CBT,GET and the PACE trial last year, AfME made a previous statement in May 2017

    Our Board of Trustees on CBT, GET and PACE
    May 16, 2017
    https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/

    so that's over two years ago.
     
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  19. Trish

    Trish Moderator Staff Member

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    New reply from Sonya, and the new version of the AfME page is now live.
    https://www.actionforme.org.uk/living-with-me/treatment-and-management/graded-exercise-therapy/

    From Sonya:
    My reply:
     

    Attached Files:

  20. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thank you @Trish , and @Action for M.E. it is encouraging that changes have been made.

    As you say there are still concerns, but this is a welcome step that has been addressed relatively quickly.
    I hope an ongoing dialogue can inform future input.
     

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