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Northern Ireland: News from Hope 4 ME & Fibro

Discussion in 'News from organisations' started by Science For ME, Aug 25, 2021.

  1. Science For ME

    Science For ME Forum Announcements

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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This series of 1-hour webinars aims to explore the radical changes taking place within the new proposed NICE Guideline for ME/CFS and the important implications arising from the developing ‘Long Covid’ crises. The webinar series will bring together experts in the field of ME/CFS to share their knowledge and experience. These webinars have been organised by the Hope 4 ME & Fibro Northern Ireland Charity and are being facilitated by the HSC Clinical Education Centre.

    15 September 2021 – The New NICE Guidelines on ME/CFS (2021): How the Paradigm has shifted

    22 September 2021 – Post-exertional Symptom Exacerbation – Activity and Rest/ Physiotherapy Advice – Physios for M.E.

    29 September 2021 – M.E. – When the Doctor Becomes the Patient

    6 October 2021 – Symptoms and Diagnosis of ME in Children/Adults with Very Severe ME

    13 October 2021 – Occupational Therapy for M.E./Patient Self-Management Advice/ ME/CFS Patient Support Groups

    Webinar Flyer

    Book via the Programmes page

    https://cec.hscni.net/m-e-myalgic-encephalomyelitis-educational-webinar-series/
     
    Hutan, Irina66, alktipping and 7 others like this.
  3. MEMarge

    MEMarge Senior Member (Voting Rights)

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    This looks like agreat series.

    They have had many good speakers at their events over the years.
     
    Hutan, alktipping, Simbindi and 2 others like this.
  4. JoanNI

    JoanNI Established Member (Voting Rights)

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    This event is different in that the HSC Clinical Education Centre are hosting the platform and advertising the webinars to healthcare providers on their website, https://cec.hscni.net/
    A massive breakthrough for us compared to previous events.
     
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    It is indeed a breakthrough and a model for what should be happening U.K. wide i hope it will be highlighted at the NICE round table
     
  6. It's M.E. Linda

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

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    One amongst thousands of messages for NICEComms.
    But it’s the sort of thing that NICE should be funding as a very minimum, when Guidelines are published :banghead:

    https://twitter.com/user/status/1440218087781847044
     
    JoanNI, obeat, MEMarge and 3 others like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

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    I don’t think NICE funds anything does it, up to NHS to pick up the baton on implementation once the guidelines are published. Which is to some extent why we are in the current situation

    so we would want to see England Wales Scotland equivalents of the NI HSC who are hosting this education taking NI example
     
  8. obeat

    obeat Senior Member (Voting Rights)

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    Merged thread

    https://twitter.com/user/status/1587024378864308226


    The VR film was made by Hope4Mefibro working with Deepa Singh from the university of Ulster and has already won two awards. It was launched at the Northern Ireland NHS confederation meeting and the charity made a lot of good contacts.
     
    Last edited by a moderator: Nov 1, 2022
    MEMarge, Hutan, JoanNI and 2 others like this.
  9. JoanNI

    JoanNI Established Member (Voting Rights)

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    Thank you for alerting me.
    We have this small survey from NICON. Had great discussions with Mental Health Champion Prof Siobhan O’Neill on the effects of disbelief, need for ME education, high suicide risk etc. She actually kept her promise to contact the charity afterwards to discuss further and Zoom meeting is set up end of November.
    The Chair of N.I. Health Committee is very keen to help too but with current political stalemate not sure how we can proceed.
    The least positive response after viewing the VR Experience, was from recently retired Chair of RCGPni, no surprise though!
     

    Attached Files:

    MEMarge, Hutan, RedFox and 2 others like this.
  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Newry, Mourne and Down District Council Chairperson, Councillor Michael Savage has hosted a reception for Bessbrook based Hope 4 ME and Fibro NI to mark the honour of their Queen’s Award for Voluntary Service. The group raise funding for Bio-Medical research, liaise with all major ME and Fibromyalgia charities and highlight awareness.
    https://www.newry.ie/articles/news/council-hosts-reception-for-local-me-and-fibromyalgia-charity
     
  11. obeat

    obeat Senior Member (Voting Rights)

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    Caroline Kingdon has been asked to give another webinar on severe ME at the clinical education centre for nurses and allied healthcare professionals in Northern Ireland in February.
     
    Hutan, Dolphin, RedFox and 5 others like this.
  12. obeat

    obeat Senior Member (Voting Rights)

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    Hutan, Dolphin, RedFox and 3 others like this.
  13. It's M.E. Linda

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

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    Do you know whether this will be available afterwards as a video resource please?

    We are due to start Implementation of NG206 within our local ICB very soon. Resources such as this would be fantastic to offer to the Commissioning Manager/Medics for viewing. Thank you and :emoji_fingers_crossed:
     
    Hutan, RedFox, MEMarge and 1 other person like this.
  14. obeat

    obeat Senior Member (Voting Rights)

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    Here's the link to the series of webinars from September 2021

    https://view.pagetiger.com/me-fibro-webinars/1

    I think that this one will be recorded as well. I can check with the nurse in our charity.
    There is more information about the series of webinars from September 2021 in the eventbrite link for the conference


    https://www.eventbrite.co.uk/e/deli...ice-guidelines-for-mecfs-tickets-522183343437
     
  15. It's M.E. Linda

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

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    Many thanks to @obeat

    The charity’s nurse has just confirmed to me that:

    “the final webinar on Severe ME, by Caroline Kingdon and her research colleague - yes the plan is that it would be recorded too, and available after in the same way via the page tiger online”

    So this will be another excellent resource which can be shared with Integrated Care Boards as educational material suitable for updating the knowledge of ME/CFS to all HCP’s.
     
    MEMarge, Trish, mango and 3 others like this.
  16. It's M.E. Linda

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

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    Was this able to go ahead @obeat please?

    It’s not appeared on the webinar list yet
    https://view.pagetiger.com/me-fibro-webinars/1
     
    Peter Trewhitt and Trish like this.
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited by a moderator: May 14, 2023
  18. obeat

    obeat Senior Member (Voting Rights)

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    MEMarge, NelliePledge, Trish and 3 others like this.
  19. obeat

    obeat Senior Member (Voting Rights)

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