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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. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    last point sounds very familiar.

    eta: had a look at the authors twitter, and found this book by David Frayne(Available 9th April 2019) The Work Cure
    https://www.pccs-books.co.uk/products/the-work-cure
     
    Last edited: Feb 23, 2019
    Cheshire, Inara, MSEsperanza and 12 others like this.
  2. Trish

    Trish Moderator Staff Member

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    @Action for M.E. I have some more questions and requests:

    1.
    @Action for M.E. do you have an idea how insulting I find this decision by your organisation?

    AfME is a charity whose whole reason for existence is the fact that hundreds of thousands of people in the UK have this horrible illness and your entire focus is, I would assume, finding ways to make our lives more bearable. That must surely include opening up all aspects of your work to the scrutiny of the people you were set up to serve.

    Otherwise we must assume you are serving some other master.

    I ask you now formally to take this decision back to whichever part of your organisation made it and ask again. Please can we see the SEE ME documents?

    If not, please could you tell us at what level this decision was made, and for what reasons it cannot be overturned. If it is on the basis of individual client confidentiality, please could it be made available with individual client identifying details redacted?
    .........................................

    2.
    On a not unrelated question, can we have a response to this?

    Again, the question is, if not, why not? What masters are you serving in keeping secret from pwME material that advises about our treatment? What do you have to hide?
    ..............................................

    3. I asked you by e-mail whether it would be possible for some of us to read and comment on the draft of the replacement/updated Toolkit document before you publish it. Has there been a decision on this?
    .....................................................

    4. I have started a new thread here to discuss the other AfME work related documents. I have included there a request to you for links to the most up to date versions of these documents.

    I find the AfME website almost impossible to navigate. I was unable to find links to either on your website and don't know whether the links I have are up to date.
    ..................................................

    Thank you.
     
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    And, for the fourth time of asking, 'liked' by 29 people now, can I please have a response to this:
    https://www.s4me.info/threads/open-...kit-for-professionals.7629/page-8#post-143863

    You posted this:
    And I replied this:
    So this time, I'd like a response that actually answers my questions.

    Seriously, what is the point of an ME charity that damages the lives of ME patients? If AfME's governance is so poor that it's churning out patient-harming advice even now, even after everything we've been through with PACE, then AfME should shut itself down.
     
  4. TiredSam

    TiredSam Moderator Staff Member

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    I wonder if, given the right support and encouragement, AfME might be able to increase their engagement here beyond their current baseline of an occasional hour per week? Nothing too dramatic of course, perhaps a gradual increase of 10% per week until they are back to work?
     
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  5. Sean

    Sean Senior Member (Voting Rights)

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    Graded Engagement Therapy
     
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  6. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Quality sarcasm :thumbup::D
     
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  7. Barry

    Barry Senior Member (Voting Rights)

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    Agreed. But nonetheless more engagement would be very good, and would not want to deter it ...
     
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  8. Alvin

    Alvin Senior Member (Voting Rights)

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    @Action for M.E. Well?
     
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