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Hope 4 ME & Fibro Northern Ireland event (Wed 4th September 2019): New Frontiers in M.E. -Transforming Patient Safety & Care

Discussion in 'General ME/CFS News' started by Andy, Mar 30, 2019.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    https://www.eventbrite.co.uk/e/new-...rming-patient-safety-care-tickets-58827518692
     
    alktipping, Daisy, Joh and 11 others like this.
  2. obeat

    obeat Senior Member (Voting Rights)

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    MEMarge likes this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  4. obeat

    obeat Senior Member (Voting Rights)

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    I think Joan is still recovering. I am too ill to attend but my sisters said it was excellent. A health commissioner said he finally understood the problem with GET.
    Caroline Kingdom gave a wise, compassionate lecture on SevereME.

    We'll add more later.
     
    Daisybell, alktipping, Hutan and 15 others like this.
  5. Trish

    Trish Moderator Staff Member

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    Was it filmed? Sounds like it was very worthwhile.
     
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  6. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Really looking forward to a report when @obeat and @JoanNI (and all other Hope4ME volunteers ) are feeling able to think again.

    Thank you, in advance, for all the hard work, before, during and after this major event. (Wish I was close enough to be able to attend!)
     
    alktipping, Hutan, Annamaria and 3 others like this.
  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Also interested in David Systrom’s talk. Did he come over to UK especially for this presentation?
    Hope that Nice looks at all of these.
    Once again thank you to the organisers.
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    looking forward to watching this when the video is out
     
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  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Great title -

    “Off the Pace and not Nice-Challenges with Evidence in Me/CFS”.
     
    Last edited: Sep 7, 2019
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  10. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I understand the event was professionally videoed. Sadly I couldn’t be there, but I’m looking forward to the release of the DVD in due course. :)
     
  11. obeat

    obeat Senior Member (Voting Rights)

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    A taster! IMG_20190906_123525.jpg FB_IMG_1567753539472.jpg FB_IMG_1567753539472.jpg
     
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  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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  13. obeat

    obeat Senior Member (Voting Rights)

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    It will be in the DVD / USB.
     
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  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  15. obeat

    obeat Senior Member (Voting Rights)

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  16. JoanNI

    JoanNI Established Member (Voting Rights)

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    Still in recovery so briefly
    David Systrom is an extremely helpful gent, nothing was any bother no matter what we asked him to do while in N.I.
    Before the presentations, I introduced him to the Chair of the Health & Social Board, Dr. Ian Clements and they chatted for ages. Dr. Clements has asked me to send him David’s slides to share with Heath Commissioner colleagues but as some were of yet unpublished work, I have to wait for the okay to do so. Expected very soon.
    It’s very obvious, top Commissioners want to help us and to learn about ME but there’s a blockage somewhere preventing them from making the urgent changes necessary, probably all waiting on the outcome of NICE Review. So very frustrating
    Conference summary
    https://1drv.ms/w/s!Ah4780-H-Hu1lxZ-eQNREvE0A4GG
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  18. obeat

    obeat Senior Member (Voting Rights)

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    For non Twitter users. Only 59 secs.
    I've written to RCNCongress to suggest Caroline as a speaker for their fringe agenda and will be doing the same with local nursing schools.
     
    It's M.E. Linda, Hutan, Amw66 and 4 others like this.
  19. obeat

    obeat Senior Member (Voting Rights)

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    A tip. If your charity group can organise a small bursary fund to get a health professional to a conference ,it opens doors. I wrote twice to our lead nurses about conference , no response. Then I mentioned our bursary fund and the conference was widely advertised. This helps raise awareness and now I have established important contacts.
     

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