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#MEAction's questions for NIH’s intramural study team

Discussion in 'General ME/CFS News' started by Sasha, Mar 5, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Some excellent questions.

    Read the rest: http://www.meaction.net/2016/03/04/meactions-questions-for-nihs-intramural-study-team/
     
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  2. duncan

    duncan Senior Member

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    I think I can sense the care that went into the wording of these questions.

    I likely would have been a bit more strident, and I'm not sure that would have been helpful on my part.

    I am curious as to how the NIH will respond to the Lyme questions. In particular, the question concerning chronic Lyme ought to be interesting as I'm thinking the people in Bethesda in charge of Lyme research put forth the opinion that chronic Lyme does not exist. Also, there seems to be some confusion about what asymptomatic can mean, but that may be due to the odd way the NIH used it in the initial protocol..
     
  3. Mary

    Mary Forum Support Assistant

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    Thanks so much @Sasha - the questions look very good to me. No, they're not strident at all - just neutrally asking for information which I think is the best way to go --
     
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  4. BurnA

    BurnA Senior Member

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    But i think the questions could have been more pointed, without being strident.

    Lets see the responses.

    I hope we see engagement and change, not just lip service.

    If we can get one thing changed, for me it would be patient numbers.
    I don't see the point in asking for an MS control group and then asking them to consider dropping a control group.
    In simplest terms we need a well defined (and plenty of) ME/CFS patient group and a healthy patient group.
    We don't need any other control groups.
     
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  5. Liz_999

    Liz_999

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    I strongly feel that the call needs to be recorded by one of the patient organisations that can listen in, if the NIH won't provide a recording.

    If the patient community cannot ask question individually (which I don't particularly mind, as long as questions are passed on), it should at least get the opportunity to listen to the responses and hence know what exactly has been said. I'm not questioning the honesty or integrity of the patient organisations but often different people remember things differently and sometimes their accounts of the same event differs dramatically.

    A recording would go a long way to prevent miscommunication, leading to wrong interpretations and perhaps overreactions.
     
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