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IAFME, Forward ME and the roles and relationships of ME organisations

Discussion in 'General Advocacy Discussions' started by Andy, Jan 31, 2019.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    The following posts discussing IAFME have been moved from this thread:
    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    No, the ME Association aren't members of IAFME and yes, we have a number of members of the forum who are part of MEAction, both UK and US.

    ETA: Following further discussion down thread from here, I need to correct the first part of my statement to "An organisation that the MEA is a member of is a member of IAFME".
     
    Last edited by a moderator: Jan 31, 2019
  2. chrisb

    chrisb Senior Member (Voting Rights)

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    Do the problems extend wider than Afme?
    The impression is given that the MEA considers itself to be represented through Forward ME, but this appears to be an entirely delusional belief as, so far as one can tell, Forward ME has no membership or constitution and its activities are solely at the discretion of a single person.
     
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  3. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Do you have a reference for that, I've not seen any statement from the MEA in regards to IAFME?
     
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  4. chrisb

    chrisb Senior Member (Voting Rights)

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    I think it was the general tenor of the minuted discussions of meetings of Forward ME last April or May when Forward ME suddenly, and apparently without preparatory discussion, decided it should become a member of IAFME. This has been why I keep going on about this subject. It seemed that all those voting thought Forward ME represented all of them. I will try and find it, but don't know when it will happen.
     
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    It is possible that I read too much into this minute from the 1st May 2018 Forward ME meeting but Charles Shepherd was present and if he had any objections they are not recorded.

    Questions and discussion 3.1 The Chairman asked if Forward-ME could invite a member of the Alliance to come and speak to us. Alexandra Heumber confirmed that would be acceptable. Several members proposed Forward-ME should be the UK member of the alliance rather than just AFME. This was agreed.

     
  6. Andy

    Andy Committee Member (& Outreach when energy allows)

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    OK, but I wouldn't personally read that to mean that "the MEA considers itself to be represented through Forward ME" in any substantial way without any direct indication of the MEA's thoughts on the matter.

    But it does mean I'll change my statement to "An organisation that the MEA is a member of is a member of IAFME".
     
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  7. chrisb

    chrisb Senior Member (Voting Rights)

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    I am not even sure I would be happy with that amendment. Groups are represented at meetings of Forward ME, but their seem only to be "linked organisations", not members. It was the use of the definite article in the term "te UK member of the alliance" which appeared to preclude the possibility of the MEA having separate membership.
     
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  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    It's all becoming rather confusing.....

    The wording is curious. My (possibly incorrect) view is that AfME and MEA provide similar services as frontline patient charities. Forward ME having a different/separate function and acting as a mechanism where other frontline charities can come together and cooperate.

    This makes it sound as though AfME and Forward ME are on a par.
     
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  9. chrisb

    chrisb Senior Member (Voting Rights)

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    I agree entirely. I don't think any of it was ever thought through. I tried to make the point at the time that the MEA appeared to have handed over representation of their members' interests to a body over which they had no control. "Delegatus non potest delegare" as the saying goes-although it does not strictly apply.
     
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  10. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Correct me if I misunderstand, A4ME is then represented more than once on IAFME, via their own position and their membership of Forward ME, no?

    If that is the case, A4ME should relinquish direct membership. Or, at a minimum, the MEA should join themselves.

    Given profound concerns regarding the scientific and ethical probity/competence of A4ME, who at MEA should be flagged to review this thread?

    A4ME PR statements post-PACE humiliation are actually practical examples of why they must be viewed with suspicion on an ongoing basis. I'll finish writing about that more practically once I can.
     
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  11. chrisb

    chrisb Senior Member (Voting Rights)

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    I tried flagging an issue with both Afme and MEA representatives. MEA said to e-mail someone. Afme could not be persuaded to respond. There seemed to be an unwillingness from both to respond here.
     
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  12. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    I wanted to point a condescendingly obvious point. I have no illusions about the practicalities of running charities as going concerns that function organisationally. But, I highlight this because there are those who would dismiss us on that basis, that we do not understand what is involved.

    If I were A4ME, I would be hoping to shift perceptions in MEA on that basis. Assuming worst case assumptions about them, which their conduct does not seek to disprove, they will now be moving to some form of Plan B. Yes, that theory assume there are specific unwritten motives...

    I will evnetuallky get to putting up that mai thatl I never get to finish to you all for opinions :(
     
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  14. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I think Esme is one of the judges on the great British Sewing Bee!
     

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