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#MEAction: Next steps: a letter to our community [from Jen Brea]

Discussion in 'General ME/CFS news' started by Andy, Jun 28, 2018.

  1. Andy

    Andy Committee Member

    Hampshire, UK
  2. Alvin

    Alvin Senior Member (Voting Rights)

    @JenB Your amazing.

    I wish i could volunteer because i think i have something to contribute but thats not in the cards since i'm not doing so good these days
    But with MEAction fighting for our future we are in good hands
    Last edited: Jun 29, 2018
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    It's a very helpful and honest letter. I hope it's read widely.
  4. Sasha

    Sasha Senior Member (Voting Rights)

    Very good! Big thanks to @JenB for this (and especially for doing it while recovering the op).

    I hadn't been aware of the IOM/SEID issue but, like the issue that came up with the wording of the UK briefing for MPs recently, it sounds as though it would be good for a bunch of people outside of the writing team (where 'groupthink' can take over) to be available to each independently read important new outputs and flag up any problems or ambiguities.

    It's my impression that S4ME has a lot of UK patients, which would make it a good source for such a bunch of fast-track reviewers for UK-targeted material (and I think they could be fast, because it's usually easier to read than to write). A private forum could be set up for volunteers.

    I don't know how many US members we've got, and whether there's the same potential for a group to assess US stuff.

    Just an idea, but it can be important to have fresh eyes on documents at the end, as long as control remains with the writers.

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