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Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

Discussion in 'Open Letters and Replies' started by Trish, Jan 12, 2019.

  1. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I also support your letter @Trish, thank you for sending it
     
  2. MeSci

    MeSci Senior Member (Voting Rights)

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    I support your letter too, @Trish.
     
  3. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Thank you Trish,

    It's a great letter and I really do appreciate your fine effort.
     
  4. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Hello all,

    1st post ever :)

    Do we know who funds Action for ME, controls their governance mechanisms, has influence over trustee selection, etc.?
     
  5. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  6. alktipping

    alktipping Senior Member (Voting Rights)

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    great letter trish but afme have proven time and again that they will not listen to actual patients they have their own agenda and it certainly is not to help us . my health was made considerably worse to the point I am 95 %percent house bound thanks to the dwp and their obsession with denying benefits to the long term sick .
     
    Maggie, Simone, MEMarge and 9 others like this.
  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    alktipping, MEMarge, JaneL and 7 others like this.
  8. dangermouse

    dangermouse Senior Member (Voting Rights)

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  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Me too, @Trish :thumbup:
     
  10. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Thank you very much :):)
     
  11. JaneL

    JaneL Senior Member (Voting Rights)

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    I fully support this letter too. Well done Trish, fantastic stuff :thumbup:

    This needs to happen. We need to push for this.
     
    alktipping, Maggie, Simone and 12 others like this.
  12. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

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    I don't have any firm answers I'm afraid! I wasn't aware this was coming out ...

    AfME have received the letter, & I know the staff member who will be dealing with it.

    I can say that AfME's rep on here (presumably the staff member / volunteer who set up the s4ME a/c name) is too busy to monitor the forum at present. So unlikely to get replies on here directly from AfME. Hopefully when Trish gets replies she can update us all - thanks again Trish.
     
    alktipping, Simone, janice and 18 others like this.
  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    This was the Q.
     
  14. Trish

    Trish Moderator Staff Member

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    Neither was I until I wrote it on Saturday. :)

    Edit: And spent most of Sunday lying in a darkened room...

    Second edit: Or did you mean you weren't aware the Toolkit was coming out?
     
    Last edited: Jan 14, 2019
    alktipping, Simone, Graham and 9 others like this.
  15. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Sorry for not being explicit. It's an amazing letter @Trish :) Thank you. A4ME have already played a direct part in damaging my health.

    I had a few things I was going to add to my original message, that may or may not be best placed in your letter. But it's related at least, so want to flag here. Or is there a general A4ME thread of some kind regarding their positioning, structure and interests that I should post to, or here?

    But I'm exhausted today and I know that I have a few tough days. I'll post properly in a few days when energy returns.
     
  16. Trish

    Trish Moderator Staff Member

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  17. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

    Messages:
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    Thank you!

    Good luck with the letter. The people who broke me in two when I was newly ill last year were armed with their publications....
     
  18. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

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    Yes - the Toolkit....
     
  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    Given you are now a trustee(?), have been more severely affected previously, straddle the patient/ organisational divide , it seems strange that you were not aware of this .

    Had you at least the opportunity to comment on the info pre issue?

    If not then you may have a significantly bigger issue than we do.
     
    ladycatlover, TiredSam, JaneL and 3 others like this.
  20. MEMarge

    MEMarge Senior Member (Voting Rights)

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    2,735
    Location:
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    I am not sure how long this toolkit has been around. It is undated.
    Under acknowledgments it does say:

    "This resource is based on the considerable knowledge and experience of Paul Davey, Project Coordinator, and Amanda Mason, Employment Adviser, who delivered our specialist 18-month pilot project, Support, Empower and Employ people with M.E. (SEE M.E.) in 2015-16."

    and includes:
    "Action for M.E. is also enormously grateful to the following people for their input, expertise and experience:
    ......
    • all those in our Patient and Carer Reference Group who reviewed this toolkit."
     

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