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CMRC draft Executive Board Meeting Minutes

Discussion in 'General ME/CFS News' started by Jonathan Edwards, Oct 17, 2017.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have been sent draft minutes for the last CMRC Executive Board Meeting. It may be of some interest.

    Present were S Holgate, E Crawley, S Chowdry, A Atunes-Martin, E Sykes (SMC) , N Issar-Brown (MRC)
    Four more joined by phone and eight sent apologies.

    Much of the agenda records conference proceedings.

    An interesting item minuted as 'Given the impact of the IOM report in the US, there is a need to secure something similar for the UK. SH has been exploring possibilities. Essential that 'patient' (sic) advocates are an essential part of the process.

    Also mentioned 'The news that the Biobank has received funding from NIH is welcomed.'
     
    Last edited: Oct 18, 2017
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  2. Andy

    Andy Administrator Staff Member

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    Was the sound of grinding teeth recorded as well?? Or gritted teeth, I seem to have confused the two in my mind. Do gritted teeth have a sound? ;)
     
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  3. Adrian

    Adrian Senior Member (Voting Rights)

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    I think we need to do our best to ensure that they get the right participation from patients rather than people who will rubber-stamp things.
     
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  4. TiredSam

    TiredSam Moderator Staff Member

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    Can't they just read the IOM report? Or do they think it would be helpful to duplicate it, or do they want to produce a version with a UK slant? I would find the third option rather concerning.
     
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  5. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

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    Textbook attention seeking behaviour, I'd say possible cluster B personality disorder. Fragile sense of self with disproportionate need for the recognition of peers.
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    There is typically a correlation between the two :)
     
  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    well hopefully this means that changes are afoot. Hopefully positive ones rather than something half baked.
     
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  8. Skippa

    Skippa Moderator Staff Member

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    Hello, I moved this thread to its new home in the Advocacy section, and then I found out that forum isn't accessible yet, and thus no commenting would be possible.

    Therefore, I have moved it back here until such time as the other forums are live and kicking.

    Thank you for your understanding.
     
  9. Skippa

    Skippa Moderator Staff Member

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    :oops:
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think it may be old news now so could be archived as a discarded prototype.
     
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