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Light noise stimulation sensitivities in M.E and whether these are being considered as extremely important in the guidelines

Discussion in 'Information for NICE guidelines' started by lunarainbows, Aug 5, 2019.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Autism has come a long way. It used to be treated with systemic discrimination but slow progress has made it less maligned. Long way to go but the progress is clear. ME hasn't started on that path yet, we are still at full discrimination.

    Absolutely correct that this would be massively positive and improve the well-being of millions. But human nature is... not always pretty may be the best way to put it. It can be wonderful but we are faced with the worst of it, at least for now. I'm positive things will change but there's no telling how long it will take to even get started. We first have to dismantle an entire fantasy-based ideology that has maligned us and on which many careers depend.

    People like Sharpe and Wessely, they will never give up attacking us. Their very reputation and identity depend on our continued death and suffering. They didn't plan for it, it's just that they are incompetent amoral jerks who can't face accountability and medicine is still unable to listen to patients when it contradicts long-held beliefs.
     
    ahimsa, ladycatlover, MEMarge and 3 others like this.
  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I don't think so. It'll be announced soon.
     
    ladycatlover, MEMarge, JaneL and 3 others like this.
  3. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Thanks. I also didn’t word my reply properly. What I meant to say, has the focus group been picked already (but not announced), or is there any chance of any of us applying to be in the focus group? If so how do we apply- or will the application process be announced later.
     
    ladycatlover, JaneL and MEMarge like this.
  4. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    That's what I assumed, but I don't know the definite answer to any of the above.

    You'll have to wait until the focus groups are announced, and then see how to get involved with them. They'll begin recruitment, I imagine, once the public announcement is made.
     
    ladycatlover, JaneL, MEMarge and 2 others like this.
  5. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Thanks :)
     
  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    No problem. We need a wide range of experiences, so I hope you apply.
     
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