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IAME -International Alliance For ME - anyone know about them?

Discussion in 'General Advocacy Discussions' started by Andy, May 12, 2018.

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  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    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: May 13, 2018
    Andy, May 12, 2018
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  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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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
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  3. Andy

    Andy Committee Member (& Outreach when energy allows)

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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
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  4. Andy

    Andy Committee Member (& Outreach when energy allows)

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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
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  5. 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
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  6. 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
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  7. Andy

    Andy Committee Member (& Outreach when energy allows)

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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
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  8. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Andy, May 12, 2018
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  9. Andy

    Andy Committee Member (& Outreach when energy allows)

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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
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  10. 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
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  11. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Cinders66, May 12, 2018
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  12. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Andy, May 12, 2018
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  13. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Andy, May 12, 2018
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  14. 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
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I see that Forward ME, United Kingdom is on the list. Are all the participants (don't know if you can call them members) aware of membership of this new alliance?
    @Russell Fleming
     
    Sly Saint, May 12, 2018
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I also see ACAF is top of the list; their website
    http://www.fibromialgia.cat/eng/frames.htm
    "You are visiting the ACAF - Association of People Affected by Fibromyalgia
    and other Central Sensitization Syndromes of Catalonia website.    "

    @Aroa what can you tell us about this association?

    eta:
    and this one (also on the list)
    Plataforma Familiars Fm-SFC-SQM, Spain
     
    Sly Saint, May 12, 2018
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  17. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    MERUK are posting on their page saying they support this organisation and the letter.

    I still find it odd to lobby from the outside in.
     
    Cinders66, May 12, 2018
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Just heard back from ME CFS Foundation South Africa they also confirm they are a member of the IAME.
     
    Sly Saint, May 12, 2018
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  19. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I find this statement odd:

    Sitting at the heart of our international advocacy work is the ethical principle that access to biomedical care must not be restricted for anyone who has a significant possibility of needing it.

    It seems a bit overly cautious and slightly vague.

    I may simply have missed it but can anybody state what exactly is the mission statement for this international group? What are they hoing to accomplish?
     
    Snowdrop, May 12, 2018
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  20. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Or it could be a way of sidestepping the use of GET and CBT, by saying that they aren't biomedical care, and therefore there is an ethical issue in not having biomedical treatment for PwME? Although that completely depends on how biomedical gets defined so I'm not so sure how strong that argument might be.

    AS for mission statement, who knows? The groups involved don't seem to feel the need to inform the patient community.
     
    Andy, May 12, 2018
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