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The ME Patient Foundation

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, Jun 23, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
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    Location:
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    Registered Charity 1181205

    I came across this charity that doesn't seem to have had a lot of activity for a while.
    advisors Dr Amy Proal @Amy Proal
    and Caroline Struthers @Caroline Struthers

    trustees: Emma Joy, Dr Claudia Gilberg, Geoff Jones, Adam Joy
    https://themepatientfoundation.org/trustees/


    https://themepatientfoundation.org/about-us/

    eta: FB
    https://www.facebook.com/TMEPFUK/?r...S-Zk0f-G2mgx5Bd17I74VzWxEVOFgm-j6ZPbNm15jbWR0

    anyone have any more information?

    eta:
    They are on the NICE guidelines stakeholder list (June 13 2019)
    https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list-2
     
    Last edited: Jul 2, 2019
  2. Trish

    Trish Moderator Staff Member

    Messages:
    44,504
    Location:
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    How odd I've never heard of them. They are a UK based registered charity.
    I can't see any dates on the website. Perhaps they are new.

    The foundation was set up by Emma Joy:
    https://themepatientfoundation.org/trustees/
     
  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  4. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    Emma Joy is on social media
     
  6. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  8. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    In addition to the website and Facebook page there is also an associated, but not yet active Twitter account:

    https://twitter.com/mepfuk

    That's an easy Twitter handle to remember - mepfuk
     
  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    Wondering what projects they have in mind I couldn’t see anything about that
     
    Annamaria, Simone, Joh and 3 others like this.
  11. Trish

    Trish Moderator Staff Member

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    Location:
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    I'm all for different ME organisations cooperating where it makes sense to do so. And of course individuals and organisation representatives joining S4ME to participate and tell us more about their organisations.
     
  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  13. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Location:
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    I am on the Surrey ME FB group that Emma runs. Always seems to have good info/responses.
    Emma did the excellent tweets from IiME conference in 2018.

    It will be v interesting to see what they are planning, sounds very much in line with "our" approach.
     
  14. ProudActivist

    ProudActivist Senior Member (Voting Rights)

    Messages:
    199
    Location:
    North-East England
    It all looks good from their site, but I do see that they link to Dr Myhill’s MAIMES campaign calling for a public enquiry into abuse of people with ME. While in an ideal world that would be great I am not sure that she is as science-based as they would want, since they are criticising the BPS research as not science-based.

    She is definitely *more* scientific and I would see her above most other doctors but I still have issues with some sweeping statements she makes as if she knows what ME and CFS are and how to treat them. She may have success for some but I don’t think her ways are THE way and have caused harm for people i know.

    One of the trustees works on Dr Myhills Natural Health Worldwide site so there is obviously some connection there.

    There is a good thread on MAIMES here, and it’s likelihood of success- I will post the link.

    https://www.s4me.info/threads/maimes-what-do-people-think.9509/
     
  15. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Location:
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    I don't really know what to think about this. I guess time will tell. Their objectives seem reasonable, though RE advocating for ICC I personally am not a big fan of the US ME4ICC brigade and how they approach the issue and go after other charities. Having said that, I do think some of the UK charities need to step up their game.

    I find the links with Dr Myhill a bit ironic given the charities stated objective of advocating for ICC.

    Still not happy about Dr Myhill leading the campaign for a public inquiry - which we so desperarely need.
     
    Last edited: Jul 1, 2019
  16. ProudActivist

    ProudActivist Senior Member (Voting Rights)

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    I agree. They are almost always right but I have been put off by some behaviour.
     
    It's M.E. Linda likes this.
  17. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    Location:
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    I’ve just been reading about them and am pleased, they’ll be able to contribute a great deal and move forward on issues so I’ll be keeping a close eye.

    Australia often follows UK policy so what happens there matters here.
     
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Location:
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  19. Andy

    Andy Committee Member

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    Location:
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    They've just launched but were stakeholders in the ME Guideline review process - how does that work?
     
  20. mango

    mango Senior Member (Voting Rights)

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    This surprised me. Is it true? Biomarkers or diagnostic biomarkers?
     

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