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Forward ME Group Minutes – 17th October 2017

Discussion in 'General ME/CFS News' started by Andy, Nov 23, 2017.

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  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Read the rest at http://www.meresearch.org.uk/news/forward-me-group-minutes-17th-october-2017/
     
  2. Trish

    Trish Moderator Staff Member

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    Odd that the meeting should discuss Paediatric ME without any mention of EC and her claims to be a world expert on the subject. I hope the subject was raised and the problems explained to the paediatrician, even if this was not thought suitable for minuting.
     
  3. Valentijn

    Valentijn Guest

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    Why was Max Davies there at all? ME is not in the realm of mental health, no matter which euphemism is being used to sound less like an ignorant jackass. And Max Davies has a history of endorsing the view that researchers don't want to get involved with the "furore," "abuse," and "intimidation" around ME/CFS. He also claimed that the PACE authors had addressed criticism of their work, though eventually conceded the point that they hadn't in regards to using a standard deviation of a scale (SF36) with non-normal distribution to create a recovery threshold.

    He engages (which is better than most), but uncritically accepts and promotes psychosocial causation of ME/CFS. It's all very holistic, in the most anti-science sense of the word :p Though at least he thinks ME patients shouldn't be discriminated against any more than mental health patients.
     
  4. Trish

    Trish Moderator Staff Member

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    Maybe he was there to be educated.
     
  5. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I'm probably not appreciating some detail in the right way but in reading these minutes they don't seem to to match the enthusiasm that the TYMES Trust expressed. Can anybody suggest what I might have missed?
    Code:
    https://www.facebook.com/tymestrust/posts/2058077487810716
     
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    So Mark Baker of NICE met Forward ME on 31 October to discuss the New Guidelines which presumably was what Charles Shepherd was referring to at the BioBank Unrest screening which was later that week. So the minutes from 31 Oct eagerly awaited
     
  7. Skycloud

    Skycloud Senior Member (Voting Rights)

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    @NelliePledge I think that's it too. I'm waiting for those minutes with interest.
    Good idea. I'd like to see the charities working together more. Why are there so many of them?!!
     
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  8. Sasha

    Sasha Senior Member (Voting Rights)

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    That was my reaction too.
     
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  9. Moosie

    Moosie Established Member (Voting Rights)

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    I’m confused (whats new?). They had a meeting on the 17th October and another on the 31st October? The link above says their next meeting is on the 31st October 2018. I thought they were changing how they work and only meeting occasionally. Or disbanding or something . . . Sorry no brain at all. I would normally keep this to myself but there are so many things I don’t get at the moment. Any light? Anyone?
     
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  10. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I think the 31st October meeting is with Mark Baker from NICE and that 2018 is wrong, it should be 2017. Normally the gap between meetings would be longer but this was arranged in order to meet with him.

    And yes, I thought that changes were going to be made with Forward-ME but I can't recall what exactly and there is no sign, that I can see, on the Forward-ME website itself, http://www.forward-me.org.uk/default.htm
     
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  11. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Somewhere it was suggested that the current NICE guidelines have been withdrawn rather than standing until the review comes out in 2020. Is it in these minutes? (I haven't read them yet)

    Does any one know?
     
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  12. NelliePledge

    NelliePledge Moderator Staff Member

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    It’s kind of understandable that there are several charities

    I previously was involved in dementia charities and there are different ones. Cancer has several as well

    Always seems to be some with more a support/care focus and others for research. And politics.
     
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  13. NelliePledge

    NelliePledge Moderator Staff Member

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    It says the existing ones will be withdrawn and replaced by the new ones. Ie not a rewrite a la BMJ
     
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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    I’m assuming they had a cards on the table discussion of which the details wouldn’t be set out in public document like these minutes which would always be a more diplomatic version.
     
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  15. NelliePledge

    NelliePledge Moderator Staff Member

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    I wouldn’t put writing a joint leaflet as top priority for the charities joint working. Need to focus on putting together some decent education for GPs, pushing for research funding, pressure on CCGs so severe patients get equal access to NHS/social services to people with other illnesses
     
  16. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I think from memory that AFME writes these minutes and there can be a battle from different sides trying to control the contents as it's felt AFME leaves out anything they feel
    uncomfortable with
     
  17. NelliePledge

    NelliePledge Moderator Staff Member

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    I would imagine as Chair that the Countess has the final say
     
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  18. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Thank you - yes. That confusion has now been clarified.

    As you were.... :)
     
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  19. NelliePledge

    NelliePledge Moderator Staff Member

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    I think it's a good point to highlight though. A new guideline is much more positive than a rewrite.
     
  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    Sonya does the CMRC ones which never seem to address anything much.

    Max Davie does seem to have said some really ill-informed things in the past, and from the minutes, it sounded as if he wasn't saying much.
     
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