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Forward-ME Group Minutes thread, July 2020 onwards

Discussion in 'General ME/CFS News' started by Andy, Jul 21, 2020.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Rather than continue our individual threads every time minutes are published, this is meant as a home for all future minutes.
     
    Last edited: Jul 21, 2020
  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Minutes from 10th July 2020, https://www.actionforme.org.uk/news/minutes-of-forward-me,-friday-10-july/

    1. Update from Sonya Chowdhury on DecodeME and ME/CFS Priority Setting Partnership.
    2. Education
    3. Previous minutes
    4. Matters arising
    4.1 Medical Education
    4.2 NICE Guideline Development Group
    4.3 Whitehouse Publications
    4.4 DWP
    4.5. RCGP Conference
    4.6. Research
    5. Post COVID19 concerns
    6. Child Protection
    7. Forward-ME website
    8. Priority Setting Partnership
    9. AOB
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Debility
     
  4. Trish

    Trish Moderator Staff Member

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    A very good turnout and detailed minutes. I wonder whether they will continue to meet on Zoom in future. With sick people involved, and people scattered all over the UK, it makes sense for them not to have to travel in order to participate.
     
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Who writes these minutes I feel like a record with the needle stuck for going on about this a lot but the long blocks of unbroken text are really too hard to read. I want to email them to ask for it to be addressed.
     
  6. Kitty

    Kitty Senior Member (Voting Rights)

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    Agree, but I think it's because they're a hybrid between minutes (where only questions and decisions are noted, usually with one paragraph for each point/contribution – which they've done) and an article, where there'd traditionally be a lot more para breaks.

    If it helps, you can double space it with one control? I don't find that helps me, though, so I've got used to going through articles pressing 'return' every few lines, them going back later to actually read it. I have to do this even with articles where there is a good number of para breaks; I think the maximum number of lines someone can read together is a bit of an individual thing, so it'd be hard to get it right for everyone.
     
  7. NelliePledge

    NelliePledge Moderator Staff Member

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    .

    Ok but this is for an ME organisation they need to make it easier without people having all that extra hassle. Thanks for suggestions unfortunately I don’t know what one control is I’m on an iPad mini and I can’t easily access this document in an editable format. Sorry if that’s a bit grumpy I realise it’s not down to you @Kitty
     
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  8. Kitty

    Kitty Senior Member (Voting Rights)

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    Sorry! As it's a MS Word doc, I assumed you'd either be reading it with Word or a WP app on a tablet.

    By saying one control, I just meant that you can double-space the entire text by just pressing Ctrl+A for 'select all' and then choosing double spacing in the Format/Paragraph menu in Word – so it's easy and quick to do if it helps.
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    ME Research
    Top 10 takeaways from Forward-ME Group Meeting on 10th July 2020

    Posted on 23 Jul 2020
    https://www.meresearch.org.uk/top-10-takeaways-from-forward-me-group-meeting-on-10th-july-2020/
     
  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Good to see though simultaneously sad to ponder they wouldn’t have the money to fund most of them.

    More money needs to be raised privately to ensure a wide mix of researchers in the field
     
  11. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Some things that caught my attention.

    About the decode ME project
    On the department of work and pensions:
    On MERUK funding:
     
  12. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Forward-ME Group Meeting Minutes – 9th September 2020

    Summary of the minutes from ME Research UK.
    https://www.meresearch.org.uk/forward-me-group-meeting-minutes-9th-september-2020/

    Direct link to full minutes, https://www.meresearch.org.uk/wp-co...-ME-Minutes-Meeting-09-September-02.10.20.pdf
     
  13. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Interesting: Sean O’Neill, Chief Reporter to the Times, was present and discussed strategies to get positive press for ME. He said for example:
    There was also a discussion on spinal surgery for ME patients, following Jonathan Edwards request to make a statement about this.
     
    Last edited: Oct 6, 2020
  14. Andy

    Andy Committee Member (& Outreach when energy allows)

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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    :giggle:

    It's beyond time the SMC's role and mission be reevaluated because it was literally created for the exact opposite purpose it is currently serving. Sorry, I meant self-serving. The impetus to create it, so that there would be a reliable, neutral, source of information that would not do that, the thing it has been doing for years. It is currently serving largely as a propaganda outlet, with a side-mission of cherry-picked media seeding.

    Basically like creating a special commission dealing with a string of arsons and years later that commission is basically staffed entirely by arsonists, arson enthusiasts and fire-researchers-with-dubious-morals-and-who-really-really-like-fire-it's-so-shiny. And somehow people who make money out of arson. Oddly enough.

    I know! Let's create an arson commission to investigate the current arson commission that is tasked with investigating arsons. But let's keep the current arsonist-filled arson commission going, somehow, because reasons. That's about the model for learning lessons about Long Covid based on the ME failure without addressing the larger ongoing ME failure. Not to diminish Long Covid, not even a bit, but when you multiply a larger number by decades, it rapidly becomes outlandishly larger.

    I really appreciate O'Neil's efforts. Really brave, knowing how it went in the past when people challenged the Wessely machine of doom.
     
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  16. chrisb

    chrisb Senior Member (Voting Rights)

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    How is it known that its stated purpose was its intended purpose?
     
    Invisible Woman and rvallee like this.
  17. strategist

    strategist Senior Member (Voting Rights)

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    The psychiatric lobby does seem to have lost some of its vitality in recent years. Wessely is still trying to influence the NICE guideline with his recent paper that supposedly shows how well CBT works. Let's hope that was his last stand.
     
  18. Andy

    Andy Committee Member (& Outreach when energy allows)

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  19. Russell Fleming

    Russell Fleming Senior Member (Voting Rights)

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    Lady Margaret Mar writes them up from a recording she makes of the meeting.
     
  20. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Sean O'Neill

    I appreciate the guy's input - we need all the help we can get but I wonder if he realizes the true scope of the matter here. It's a bit like seeing a tree & think all that you see is all that's there - nope -hidden away are big roots branching off into increasingly smaller roots & into tiny hairs & the microscopic fungi spreading out far and wide.

    When the BPS cabal aren't fighting back or seem quiet, that's when you need to keep a good eye in them. They're plotting something. Look how long IAPT was in the planning, many years before it came to our attention & we're keeping our eyes peeled.

    I'm not sure I agree with not engaging with misinformation spread by the SMC either. Allowing misinformation to spread is to continue to allow people to be discriminated against. It is in some of those exchanges that we have won allies.

    I believe that when the SMC spouts nonsense then using the opportunity to have a conversation on social media allows a wider audience to become familiar with the issue & make up their minds having heard from both sides.
     

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