Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Northern Ireland--Message to all GPs re: physiological nature of ME

Discussion in 'General ME/CFS News' started by Keela Too, Jun 1, 2017.

  1. Keela Too

    Keela Too Sally Burch

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    This thread was split from the thread:
    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF


    The chair of the Northern Ireland Health and Social Care board attended our conference in Belfast, and we can now share the promise he made us on Tuesday - that he will send out a message to all GPs inNIreland about the physiological nature of ME. Exciting time for us. See info on our FB page

    PS Sorry for gate crashing this thread. We are all just a tad pleased LOL ☺️
     
    Last edited by a moderator: Jun 1, 2017
    PatJ, Mark, luludji and 53 others like this.
  2. Daisymay

    Daisymay Senior Member

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    That's really excellent news! NI leading the way. Very well done everyone over there in NI.
     
    Yogi, lazybones, Hutan and 12 others like this.
  3. dangermouse

    dangermouse Senior Member

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    lazybones, Hutan, Jennifer J and 7 others like this.
  4. aimossy

    aimossy Senior Member

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    Deserves it's own thread? This seems a pretty big win to my mind :cool:
     
    lazybones, justy, Hutan and 15 others like this.
  5. Jo Best

    Jo Best Senior Member

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    Congratulations :balloons: As stated in the FB post, thanks to six years of work since 2011 and in turn, another positive outcome from the Invest in ME Research conference events building since 2006 and bringing the world's finest to meet together in UK to form alliances and cooperate towards change for ME patients across UK, Europe and beyond. :hug:
     
  6. Binkie4

    Binkie4 Senior Member

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    When the letter is written and sent out, please can you post a copy? I ( actually DH) made the best copy we could of the NY letter and put it into my gp's hands. He started to read and absorb it!

    I would like to give a copy of any letter indicating a change of policy to my GP. I think this is one way we can all push. His attitude is changing. We need to continue the momentum.

    EDIT: Congratulations Northern Ireland

    @Keela Too
     
    Last edited: Jun 1, 2017
    lazybones, Hutan, Jennifer J and 14 others like this.
  7. simeyss

    simeyss

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    Wow! How exciting! Congratulations! Huge win and terrific news!
     
    lazybones, Hutan, Jennifer J and 11 others like this.
  8. Laurie P

    Laurie P

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    You can download a PDF of the New York Department of Health letter here:
    https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view

    Congratulations Northern Ireland!

    Thank you Janet and Ashley and everyone contributing to this thread. It's so great to see the pictures!

    I can't wait for tomorrow's coverage and to get the DVDs. Good things are happening!!!
     
    lazybones, Hutan, Jennifer J and 15 others like this.
  9. Binkie4

    Binkie4 Senior Member

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    @Laurie P

    Thank you. I saw the formatted copy earlier today, but I had a GP appointment on Tues and wanted to hand deliver so we did what we could with what was available.
     
    lazybones, Jennifer J and Laurie P like this.
  10. Keela Too

    Keela Too Sally Burch

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    To those who asked about getting a copy of what is sent to Northern Irish GPs - Yes we certainly hope that we will be given a copy of the advice from the Northern Ireland HSCB, and that we will be able to share it widely.
     
    justy, Jennifer J, simeyss and 3 others like this.
  11. Tuha

    Tuha Senior Member

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    can you tell us more how were you able to achieve this? Maybe it can be a good concept also for other countries
     
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  12. Keela Too

    Keela Too Sally Burch

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    I don't think there is one easy answer. Our group was set up by Joan McParland in 2011, and she was already running conferences with visiting international speakers by the time I joined the group. I then ended up on the committee working with her from early 2014. There has been a lot of work behind the scenes and often it feels like we just keep rolling the dice, optimistically wondering if this time it will work... and on and on... So who knows which action finally made a difference.
     
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  13. gregh286

    gregh286 Senior Member

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    Nice one Keela!!
    Great work..
     
  14. Tuha

    Tuha Senior Member

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    And can you describe more the actions you took?
     
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  15. Keela Too

    Keela Too Sally Burch

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    Too many just now to recount & we are all still in aftermath of running "Seeking Solutions".

    Basically we just kept at it - taking every opportunity we could. Joan McParland and other local advocates have been campaigning for years!

    And the things that WE think might have been turning points may not in fact have been key factors. Who knows what small conversation might have turned the tide, but we just kept making a noise.

    One thing that may have helped in the run up to this conference was that we produced, an 8 page "brochure" advertising "Seeking Solutions" and had it put into all 400 delegate packs on the day of the NICON conference here, just prior to our conference. That brochure can be seen here:

    http://hope4mefibro.org/wp-content/...bro-Seeking-Solutions-Conference-Brochure.pdf

    Perhaps that helped, who knows? There have been many other events and actions prior to this, and nothing happens in isolation. The work of others both at home and further afield have also had a huge impact because we can highlight their work, and build on the foundations they have laid.

    No simple answers I'm afraid.
     
  16. lazybones

    lazybones

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    In recovery mode so trying to focus on how it all came together to this positive outcome. I'll do a summary soon from the first impromptu conference for Judy Mikovits when XMRV hit the headlines.
    We were at small advantage in NI with having a devolved government who technically can taken measures outside the remit of NICE Guidelines, that hasn't totally happened yet and a lot will depend on the outcomes of the review this year.
    We'll know more when we meet to discuss the actual content of the GP notification going out. I'm not sure how much influence we will have on this content but will certainly be fighting to make sure it's as strong as possible.
    I can't fully remember the whole conversation but the Commissioner definitely said biomedical research evidence was being included for the GPs to consider.
    We will build on the progress by asking for an official announcement from DOH to widen the area of knowledge to hospital staff, O/Ts etc etc.
    After recovery of course, isn't that correct Sally Burch, recovery?
    (Must change my profile, it's from the secretive XMRV times!)
     
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  17. Keela Too

    Keela Too Sally Burch

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    LOL Mrs @lazybones - what a misnomer that is... trying to keep up with you always xx
     
    Jennifer J likes this.

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