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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.

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Page 9 of 11
  1. 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.
     
    Trish, Mar 3, 2019
    #161
    MEMarge, Skycloud, ScottTriGuy and 24 others like this.
  2. 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.
     
    Sasha, Mar 3, 2019
    #162
    MEMarge, Sarah94, Skycloud and 24 others like this.
  3. TiredSam

    TiredSam Committee 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?
     
    TiredSam, Mar 4, 2019
    #163
    Joh, Anna H, MEMarge and 22 others like this.
  4. Sean

    Sean Moderator Staff Member

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    Graded Engagement Therapy
     
    Sean, Mar 4, 2019
    #164
    Anna H, MEMarge, Barry and 6 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Quality sarcasm :thumbup::D
     
    NelliePledge, Mar 4, 2019
    #165
    Anna H, MEMarge, Barry and 5 others like this.
  6. 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 ...
     
    Barry, Mar 4, 2019
    #166
    NelliePledge and brf like this.
  7. Alvin

    Alvin Senior Member (Voting Rights)

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    @Action for M.E. Well?
     
    Alvin, Mar 4, 2019
    #167
    rvallee likes this.
  8. anniekim

    anniekim Senior Member (Voting Rights)

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    @Trish, may I ask did Action for ME ever revise their toolkit as they said they would last January after temporarily taking it down? When I went on their website today, there is no further information after their update last January saying they would take it down temporarily. It still seems not available with no revisions. Many thanks.
     
    anniekim, Oct 9, 2019
    #168
    Barry, ladycatlover, JaneL and 3 others like this.
  9. Trish

    Trish Moderator Staff Member

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    Thanks for the reminder. I'll write to them when I can find some energy!
     
    Trish, Oct 9, 2019
    #169
    Barry, ladycatlover, MEMarge and 4 others like this.
  10. anniekim

    anniekim Senior Member (Voting Rights)

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    Thank you @Trish, health first!
     
    anniekim, Oct 9, 2019
    #170
    ladycatlover, MEMarge, Annamaria and 3 others like this.
  11. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Wonder if their "Big Survey" results to be released at their AGM, next Tues, 15 Oct, will include any info on how many people with ME can work/study...
     
    MEMarge, Oct 10, 2019
    #171
    JaneL, Annamaria, Trish and 2 others like this.
  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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    From their website it looks as though a couple of the toolkits, not the one for professionals, have been updated.

    Does anyone know how different they are/any better?

    Just getting background for Tues, but I suspect that a general Q re employment/studying rates will be more appropriate for Q and A, and that specific queries can be asked of individuals/followed up by email.

    Website seems to be down currently...
     
    Last edited: Oct 13, 2019
    MEMarge, Oct 13, 2019
    #172
    Annamaria, JaneL, Andy and 1 other person like this.
  13. Trish

    Trish Moderator Staff Member

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    I did have a quick glance at the one for patients and the one for employers a week or so ago. To be honest I can't remember what was in the originals.

    One thing I spotted was that they still describe pacing as finding a baseline and then adding 10% at a time, which is not pacing. I should have kept copies of the originals for comparison.

    If you want a specific question to ask, you could ask why they describe pacing in all their materials in this way.
     
    Trish, Oct 13, 2019
    #173
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  14. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Thanks Trish.
    I can now access them online again.
     
    MEMarge, Oct 13, 2019
    #174
    Annamaria likes this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: Oct 13, 2019
    Sly Saint, Oct 13, 2019
    #175
    ukxmrv, Anna H, MEMarge and 3 others like this.
  16. MEMarge

    MEMarge Senior Member (Voting Rights)

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    The two booklets ie Employer and Employee are very similar initially.

    P4, "What is ME?" incudes the following statements:

    "Around a quarter of people with M.E. are severely affected, leaving them house- and/or bed-bound for long periods. Those experiencing this level of symptom severity are unable to work."

    "This booklet is for anyone employing or managing someone with mild to moderate M.E. and outlines the employment rights and support available for people with M.E..."

    So I guess I will be asking whether they think that the majority of people who consider themselves "moderate" will be able to be in some paid employment?

    Both these leaflets have "Copyright 2016" at the end, so may not have been substantially altered
     
    MEMarge, Oct 13, 2019
    #176
    ukxmrv, It's M.E. Linda, chrisb and 4 others like this.
  17. NelliePledge

    NelliePledge Moderator Staff Member

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    NelliePledge, Oct 13, 2019
    #177
    ukxmrv, Anna H, MEMarge and 3 others like this.
  18. Forestvon

    Forestvon Senior Member (Voting Rights)

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    I support your letter too, @Trish - well done.
     
    Forestvon, Oct 14, 2019
    #178
    JaneL, ukxmrv, MEMarge and 1 other person like this.
  19. Trish

    Trish Moderator Staff Member

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    Thanks, @Forestvon. I really should have followed it up by now to try to find out what they are doing about it, if anything. If anyone else wants to, do go ahead!
     
    Trish, Oct 14, 2019
    #179
    Annamaria, JaneL, Forestvon and 1 other person like this.
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    (BTW just tried to search on Action for ME under member and they don't come up ? ditto trying to tag them @Adrian )
    But what this post is about:

    In this thread from August 2018
    https://www.s4me.info/threads/actio...l-treatments-for-m-e-position-statement.5532/

    AfME, following their 'statement about PACE', said they would be updating their information leaflets.
    they also said they would be deleting the original 'me and work' one, superceded by the 2016 version which is still bad..........and the old one is still available online https://www.actionforme.org.uk/uploads/me-and-work.pdf

    what, if anything, have AfME changed to reflect this supposed change of stance re the PACE trial and all it stands for?

    @phil_in_bristol
     
    Sly Saint, Oct 14, 2019
    #180
    MSEsperanza, Annamaria, JaneL and 5 others like this.
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