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World ME Alliance, was previously IAFME: International Alliance for ME

Discussion in 'News from organisations' started by Andy, Jan 15, 2018.

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  1. large donner

    large donner Guest

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    So, AfME need to publicly condemn Esther Crawley and bring up all the issues with her on the public record and that will help the WHO and the people in Geneva get a grasp of the kind of issues we are up against.

    Will you do that?
     
    large donner, Apr 30, 2018
    #21
    alktipping, Simone, Alison Orr and 4 others like this.
  2. Samuel

    Samuel Senior Member (Voting Rights)

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    @Action for M.E.

    i appreciate your answering questions on this forum. i wonder if you would be so kind as to answer an absolutely direct question, absolutely directly?

    "do you /both/ [1] regard m.e. as an ordinary organic disease and [2] have an unbendable policy of acting according to that?" you either both 1 and 2 or you do not.

    i do not mean to be harsh at all.

    however, i feel that your recent response is written such that many readers would strongly /infer/ the above. [but it does not state it.]

    we know from experience that there are people who imply things and, because they do not state them, give themselves weasel room. they give the wrong impression to their audience. this suits their purposes. as you know [or should know], we have had enough of that.

    therefore, i want no weasel room from your answer whatsoever. an example of weasel room is referring to who classification and "mounting evidence". that allows you to still not both 1 and 2 while still influencing the audience to infer that you both 1 and 2.

    my question still leaves too much weasel room, in that you might interpret "ordinary organic disease" differently from us. however, i do not have the health resources at this time to qualify it further. we'll have to deal with that after you provide your answer.

    if this has been unambiguously answered elsewhere on the forum, with no weasel room, then please feel free to link to that. however, please make sure that it answers the exact question asked, with no weasel room.

    please do not use a page on your website as an answer.

    thank you.
     
    Samuel, Apr 30, 2018
    #22
    Allele, alktipping, Binkie4 and 7 others like this.
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thanks for your response. It is appreciated.

    Unfortunately, Forward ME were not really up to speed with the implications of changes - it is very complex, as highlighted by @Dx Revision Watch .

    Hopefully the meeting will generate a strategy and not simply another letter.

    Letters work well for recording things at a set point in time, for explanations and conveying responses- however challenge and change for something of this scale and agenda require a multi pronged , systemic campaign.
     
    Amw66, May 2, 2018
    #23
    alktipping, Simone, MEMarge and 5 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I'm sorry but you should not have to be told these things by an advocate; as 'the biggest ME charity in the UK' you should know/have known them long ago and acted accordingly. By 'going along' with the whole PACE CBT/GET stance you have only helped to reinforce the psychosocial agenda.
     
    Sly Saint, May 3, 2018
    #24
    Moosie, Allele, alktipping and 12 others like this.
  5. Inara

    Inara Senior Member (Voting Rights)

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    I really would like an answer to that. Very good question.
     
    Inara, May 7, 2018
    #25
    Allele, Samuel and alktipping like this.
  6. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    Thanks for the update. I suspect that we have all learned something from this sorry tale.

    Reverting to the subject of Afme advocacy in Geneva, the question that will naturally arise is to what extent is Afme strategy independent of Forward-ME? Do these developments mean that Afme will be using its funds to create a presence in Geneva, where any advocacy it undertakes may be based on partial and incomplete information.
     
    chrisb, May 10, 2018
    #26
    ScottTriGuy, MEMarge, Invisible Woman and 4 others like this.
  7. Andy

    Andy Committee Member

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    Merged thread

    This thread was split from:

    https://www.s4me.info/threads/afme-...-millionsmissing-contribution-should-be.3489/

    to provide IAME it's own thread.


    IAME (International Alliance for M.E.)
    IAME, based in Geneva, is a collaboration between M.E. organisations across the world. Through a coordinated, inclusive and worldwide advocacy movement along with the current mobilisation of the M.E community, the IAME aims to get a coordinated and appropriate public health response to M.E. from the World Health Organisation (WHO) and its Member States. IAME offers a formal consultation channel to WHO and its Member States.
    https://www.facebook.com/groups/IAforME/about/

    Got to that through this Facebook post from AfME
     
    Last edited by a moderator: Jul 28, 2021
    Andy, May 12, 2018
    #27
    ScottTriGuy, MEMarge, Aroa and 5 others like this.
  8. Andy

    Andy Committee Member

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    https://www.actionforme.org.uk/news/international-m.e.-advocacy-our-latest-project/

    Doesn't mention what other ME organisations are involved.
     
    Andy, May 12, 2018
    #28
    MEMarge, Luther Blissett, adambeyoncelowe and 1 other person like this.
  9. Andy

    Andy Committee Member

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    Japan ME Association seems to be one
    https://mecfsjapan.com/2018/05/11/millionsmissing/

    I can remember that last year AfME claimed that Solve ME were part of it, I contacted Solve and they didn't know anything about it.
     
    Andy, May 12, 2018
    #29
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  10. Andy

    Andy Committee Member

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    And from the FB group I linked to above
    iame.jpg
    No link to anywhere else, just that screenshot posted.
     
    Andy, May 12, 2018
    #30
    MEMarge, Luther Blissett, Inara and 2 others like this.
  11. Trish

    Trish Moderator Staff Member

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    It looks like the facebook page for IAME was set up on 23rd April this year. I can't find a website for them. So they launched an 'International' Organisation in January this year that has no members apart from AfME and no website.

    I remember they tried to set up such an organisation 2 years ago and it vanished pretty quickly after listing some organisations as members who knew nothing about it. There's a discussion of it on PR.

    This does look like another attempt at empire building by AfME.

    They would do better to spend their money on getting their own house in order, for example stopping using psychologist Hazel O'Dowd as their adviser to lead on producing materials for doctors and patients.
     
    Trish, May 12, 2018
    #31
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  12. Action for M.E.

    Action for M.E. Established Member (Voting Rights)

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    The IAME members are listed on our international advocacy page, and you can see pictures, shoes and stories shared at the IAME #MillionsMissing protest in Geneva today at https://www.facebook.com/groups/IAforME and on Twitter @IAforME.

    IAME doesn't have its own website yet, but as the collaboration develops this is something that it will discuss. As @Trish mentions, the IAME was set up two years ago but this is its first event. It will host a second event at the World Health Assembly in Geneva on 22 May - @Andy has shared the flier for this further up the thread.

    Clare Ogden
    Head of Communications and Engagement
    Action for M.E.
     
    Action for M.E., May 12, 2018
    #32
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  13. Andy

    Andy Committee Member

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    The slow drip of information continues..

    https://www.actionforme.org.uk/news/iame-letter-to-the-who-for-me-awareness-day/
     
    Andy, May 12, 2018
    #33
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  14. Andy

    Andy Committee Member

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    Andy, May 12, 2018
    #34
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  15. Andy

    Andy Committee Member

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    From the letter the members apparently are
    I've sent a message to Solve to ask if they did agree after all to be involved.
     
    Andy, May 12, 2018
    #35
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  16. Trish

    Trish Moderator Staff Member

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    I appreciate you replying, but I can't see any organisations listed on this page. https://www.actionforme.org.uk/news/international-m.e.-advocacy-our-latest-project/

    Is there another page somewhere?

    What letter, @Andy? I'm getting very confused here.
     
    Trish, May 12, 2018
    #36
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  17. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Cinders66, May 12, 2018
    #37
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  18. Andy

    Andy Committee Member

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    Andy, May 12, 2018
    #38
    Luther Blissett, adambeyoncelowe and Invisible Woman like this.
  19. Andy

    Andy Committee Member

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    Andy, May 12, 2018
    #39
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  20. Trish

    Trish Moderator Staff Member

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    Thanks, @Cinders66, I agree it's a good letter.

    It would be helpful for pwME to know more of what this organisation plans to do on our behalf.

    It seems strange that there is no written documentation of aims, plans, etc. available to pwME to read. I'm still not clear whether it's an organisation, or a project by AfME to take a few actions at international level and get other organisations to sign letters.

    Are there meetings, a committee with representatives from all the organisations, an agreed agenda etc? I do understand it's early days and hope it achieves some positive outcomes, and I don't mean to sound hostile, I'm just genuinely puzzled.
     
    Trish, May 12, 2018
    #40
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