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Forward ME Group minutes from meeting 7th February 2018

Discussion in 'General ME/CFS News' started by Andy, Mar 3, 2018.

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  1. Andy

    Andy Committee Member

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    Discussed
    • Green Paper on Mental Health Services for children
    • Workshop on review of NICE Guideline 16 January 2018
    • Royal College of General Practitioners Conference, Glasgow, October
    • DWP
    • Any other business
    http://www.forward-me.org.uk/7th February 2018.htm
     
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  2. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    :thumbsdown: Poor that AFME which has paid employees couldn’t manage to get someone along to this anyone would think they don’t prioritise collaboration with other charities
     
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  3. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Pity the letter to the Times wasn't published
     
  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Yes it is - maybe they should try to get some MPs to sign it too also why limit to the Times should be to other newspapers and what about online like Huffington Post seems like a narrow approach
     
  5. MeSci

    MeSci Senior Member (Voting Rights)

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  6. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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    Really fascinating and heartening to read the minutes of the meeting and learn about the efforts ongoing regarding the review of NICE guidelines. It gives me hope.

    Some excellent observations made within the minutes and notes, including the need to call ME what it is: ME.

    I should note I am not surprised The Times didn’t publish the letter. It was, to me, a letter that wouldn’t mean anything to a lay reader so stood little chance of publication. Always important to match message with medium.

    Thanks, again, for sharing here. Greatly appreciated.
     
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  7. Andy

    Andy Committee Member

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    Possibly, I do think that it tends to take time for the minutes to become available.
     
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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    From their letter to the times:

    That sounds too strong to me. What does anyone else thing?
     
  9. Skycloud

    Skycloud Senior Member (Voting Rights)

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    So I wonder which 3 papers he is refering to here:

    2 day CPET paper? And?
     
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  10. Barry

    Barry Senior Member (Voting Rights)

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    Agreed. All that counts is effective communication; if it's ineffective it's a total waste of time and effort. I think of communication as a transmitter sending information to a receiver, and the receiver getting from the information what the transmitter intended. To me, communication is only achieved if all the following apply:
    1. The transmitter successfully sends some information.
    2. The receiver successfully receives the same information, uncorrupted.
    3. The receiver processes the information, and understands the transmitter's interpretation.
    I think that for ME advocacy, '3' is the one that needs advancing, because it is a total waste of energy and hope, transmitting inappropriate information to audiences you need to win over. Not surprisingly, a great deal of science-focused advocacy has been and is being done - and don't misunderstand me, must continue because it is vital.

    But I think we need to broaden who we enlighten, especially as now is probably a really good time, with Unrest, NICE guidelines overhaul, Carol Monaghan's political initiative, and Sarah Myhill's GMC initiative ... and yours. The pressure is on the Wessly'ites from increasingly more and more quarters, and the more keeps on expanding the better.
     
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    interesting tweet
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Agreed, I think this is far too strong. I worry that Forward ME are tending to overegg the biological evidence. Maybe fortunate it was not published. I certainly think it would have been incomprehensible to most people.
     
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  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I like Jane. She tells it as it is!

    Perhaps someone could reword the letter for Forward-ME? There are other publications to try, too.
     
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  14. dannybex

    dannybex Senior Member (Voting Rights)

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    "Dr Weir said that the “D” IN SEID stood for “disorder” – an unspecific term..."

    Not that I like the name, but the 'D' stands for 'Disease'.
     
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