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Best ME charity to get involved with in the U.K.

Discussion in 'General ME/CFS Discussion' started by Ambrosia_angel, May 1, 2017.

  1. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I'm looking for a charity. Ideally I'd like a charity which would allow me to volunteer with teens and children with ME. It would include supporting young people with ME to remain active in their community and avoid isolation. Something like befriending.

    Does this exist?

    Are there any charities to do this with without compromising my morals.

    I can only think of AFME (previously AYME) but firstly I'm unsure of whether they actually do this.

    And secondly they've indirectly harmed patients for so long. I wouldn't mind getting involved if I knew they were attempting to get their act together though.

    Advice?
     
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  2. AndyPR

    AndyPR Senior Member

    TYMES Trust without a doubt http://www.tymestrust.org

    Whether they can offer the exact opportunities you're after I'm not sure but in terms of their ethical stance towards dealing with children with ME they are the ones to recommend.
     
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  3. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Thank you! I checked out their site. It seems that they do more work with educating professionals rather than volunteering directly with children and their families. I would like to get involved but I'm not exactly qualified for that :/
    I will message them anyway to see what they say. I know that not all charities put everything that they do on their site.

    Do you know if AFME is worth a shot? I've researched them up but I'm a bit confused about their current stance on the ME. They say that they do home-based volunteering on their site so that's why I'm considering them. Have they actually done anything sincere to oppose the damage they caused by supporting the pace trial.
     
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  4. Valentijn

    Valentijn Senior Member

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    They still seem fairly committed to being a fatigue charity, with little interest in protecting ME patients from bad science and bad treatments. Sometimes they show potential for change, but it never seems to pan out.
     
  5. slysaint

    slysaint Senior Member

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    I'd stay away from AfME. I think many on PR will agree they are part of the problem, not least because they support Esther Crawley.

    Maybe you could look into an ME support group for your area?
     
  6. Ambrosia_angel

    Ambrosia_angel Senior Member

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    aww that's a shame. I'd love to be able to do something like that. I'll just have to look at other ways to get involved.

    I feel like this service is so needed. Thanks for responding
     
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  7. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Someone tagged me in another thread regarding this but I can't find it :thumbdown::thumbdown:
     
  8. AndyPR

    AndyPR Senior Member

    If the tag still exists then it should still be in your list of notifications, have a look back through them.
     
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  9. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I had a look already. The post was probably deleted or something.
     
  10. Cinders66

    Cinders66 Senior Member

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    AFME/AYME aren't getting their act together but they do offer what they call peer mentoring or peer support (they support anything DIY) so if that's what you can help with it would seem a waste not to do so just because of the charitys poor record.
     
  11. slysaint

    slysaint Senior Member

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    I think it goes a bit deeper than that.
    The best help would be to get them to look elsewhere (eg TYMES trust) for help rather than rely on and fund a charity that actively promotes the very people who are perpetuating the situation; the lack of real treatment (ie EC and Co).

    @Ambrosia_angel there is now a carers/parents forum; maybe someone there can give you some ideas.
     
    Valentijn likes this.

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