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MECFS Patient Researcher Accolade Portfolio

Discussion in 'General Advocacy Discussions' started by InfiniteRubix, Jul 28, 2020.

  1. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Hi all,

    Just flagging the "MECFS Patient Researcher Accolade Portfolio" @mecfspatientresearchers on Facebook at https://www.facebook.com/mecfspatientresearchers/

    You will recognise a number of research heroes. There are other profiles in the works, once gotten round to (energy permitting), including:
    • @Natalie and Josh of Voices and Dialogues
    • Suzy Chapman
    • Mary Dimmock
    • Sue Waddle of MERUK
    • Nicola from @PhysiosforME
    Once these are added, I don't imagine that there will be frequent updates. Please make profile suggestions and amendment suggestions where appropriate, taking account of the below (it's not a rollcall of advocates per se, but of 1) patient/carer researchers or 2) patients/carers that propagate or advance research in a professional field or generally). Input always appreciated.

    Announcement for those who don't have FB:
    from

     
    Last edited: Jul 28, 2020
  2. Simon M

    Simon M Senior Member (Voting Rights)

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    Suggestion: @Andy Devereux-Cooke is an investigator for DecodeME, the world's largest ME study.

    (Oh, and thanks for including me :))
     
  3. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Pleasure :) Please always suggest whomever should be considered (we've got @Andy) :)
     
    Hutan, MEMarge, Simon M and 1 other person like this.
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Apologies if you already have these. I don't "facebook".

    Do you have @Tom Kindlon for his work on Under Reporting of Harms in PACE among other things.

    Also, Robert Courtney and Alem Mattees?

    Edit..... Act of autocorrect
     
    MEMarge and NelliePledge like this.
  5. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Yup, all there :)

    Up there with acts of god, fat fingers and crossed eyes in my experience....
     
    MEMarge, Simon M and Invisible Woman like this.
  6. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    BTW the page is publicly viewable on the web without a Facebook account, if ever needed.

    Facebook is a social evil, but I'm prisoner in a few ways. I minimise the risk in a few ways, including via Facebook Container on Firefox on desktop.

    Stay free from the chains if you can ;)
     
    Simon M and Invisible Woman like this.
  7. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Just a note, I'm not on Facebook and would prefer that no profile is written about me for personal reasons.
     
  8. Trish

    Trish Moderator Staff Member

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    @InfiniteRubix I assume you have sought and gained permission from the individuals listed to be included. Some patient/carer researchers may not wish to be identified as such.
     
  9. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Understood, although I don't know if you are already mentioned (please do DM me if there is a profile to remove)

    Totally understand anyone who wishes to be deleted, which I can intricately relate to.

    We included people who are already discussed or articles written about them in the public domain, so definitely no doxxing of private identities or anything of that sort. Most, if not all, already have their own sites, Research Gate profiles, etc. People had also already been contacted to let them know, as a courtesy, opportunity to amend and also because it's positive thing that people have appreciated. Some may also wish to identify a charity for donation on their profile.

    (Edited for clarity)
     
    Hutan, MEMarge, ahimsa and 5 others like this.
  10. Trish

    Trish Moderator Staff Member

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    Thanks for clarifying.
     
  11. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    No probs :)
     
    MEMarge, Invisible Woman and Trish like this.
  12. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    FYI all. I have not forgotten the promised updates.

    Bitten off more than can chew and life getting more complicated.
     
    MEMarge likes this.
  13. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Just an FYI that the ever slowly depleting todo list will be added to and a placeholder is now added:

     
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  14. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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