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Applications invited for CMRC Patient Advisory Group

Discussion in 'Advocacy Action Alerts' started by Andy, Oct 11, 2018.

  1. Andy

    Andy Committee Member

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    Anybody here with spare capacity to apply for this?
    https://www.actionforme.org.uk/news/applications-invited-for-cmrc-patient-advisory-group/
     
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Do we know if the problems/issues that existed when this group was initially set up have been resolved?

    Obviously the Board members mentioned are reassuring.
     
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  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @phil_in_bristol (CMRC PAG member) might be able to answer questions on this(?)
     
  4. chrisb

    chrisb Senior Member (Voting Rights)

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    Who selects the selectors?
     
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  5. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  6. Adrian

    Adrian Administrator

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    I thought the document felt quite strange and not very encouraging and was detailed in some working practices but didn't give a good overview (hence missing things like how meetings happen). Also I'm not keep on the use of a phone bridge things like skype of zoom are much easier to use.

    Its also not clear if travel is necessary (personally I don't travel but I do a lot via video conference and so its not clear if that is an option).

    Having said that I am thinking of applying.
     
  7. Barry

    Barry Senior Member (Voting Rights)

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    Very good :).
     
  8. phil_in_bristol

    phil_in_bristol Established Member

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    Hi - yes I will come back t this shortly! I am still on the PAG for CMRC.
     
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  9. phil_in_bristol

    phil_in_bristol Established Member

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    Board meetings are held in London (there's one next month), and there was one very early this year in Southampton (at the main hospital). PAG reps have an expenses budget for travel. We are actively encouraged to go, as patient reps, and in fact in January (Southampton) there were FIVE of us there. (not sure how that happened!!!!)
     
  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Ok thanks where about in London?
     
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  11. phil_in_bristol

    phil_in_bristol Established Member

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    not sure - the email I found said "the MRC building" - don't know offhand if this is the MRC London Institute of Medical Sciences or the MRC at One Kemble Street.
     
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  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Bump! deadline for this is 7 November, ie Wed.

    @Adrian are you applying?
     
  13. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Phil spoke about the PAG at CMRC Sep 20

     
  14. MEMarge

    MEMarge Senior Member (Voting Rights)

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  15. Adrian

    Adrian Administrator

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    Thanks for reminding me. I had completely forgotten. I will try to put something together tonight or tomorrow.
     
  16. phil_in_bristol

    phil_in_bristol Established Member

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    Hi - five of those named are still on the PAG, yes, but we're looking for about 5 new people - so do apply!

    I personally am off to London tomorrow to attend the CMRC quarterly meeting there. Need to prep for this - I'm not in the same league as some of these (any of these???) scientists...... we'll hopefully talk about recruitment there, I know there have been a number of applications already (which is good news!). The patient voice will be heard!
     
  17. phil_in_bristol

    phil_in_bristol Established Member

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    Ah my embarrassing appearance. this was Sept 2017, last year. I had had an (unrelated to ME) illness, and an injury (requiring surgery), & a house move (!) all in the weeks running up to that. So I wasn't best prepared.

    We no longer have any connection to Bristol University, i would mention.
     
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Action for M.E.
    28 November at 02:58 ·
    First clip from our AGM and conference this morning... our new Trustee candidate Phil Murray talking about the need for biomedical research to find biomarkers for what may well be not one single illness but many under the #MECFS umbrella.

    @phil_in_bristol
     
    Last edited: Dec 2, 2018
  19. Andy

    Andy Committee Member

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  20. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I think that we will be getting recordings off full talks starting sometime this week.

    They may well be adding up to 7 peopel to the PAG, may hear re this before Christmas, not sure.
     
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