Northern Ireland: News from Hope 4 ME & Fibro

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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/
 
It's M.E. Linda said:
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:

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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
 
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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.
 
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obeat said:


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.
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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!
 

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obeat said:
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.
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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:
 
It's M.E. Linda said:
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:
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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
 
obeat said:
I think that this one will be recorded as well. I can check with the nurse in our charity.
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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.
 


Hope 4 ME & Fibro NI

Two Lives – One Story is a deeply personal video that reflects the reality of those living with Myalgic Encephalomyelitis and the strikingly similar symptoms within one subset of Long Covid patients. It is an honest portrayal of loss, resilience, and the long struggle for recognition.

The parallels between past and present patients highlights the urgent need for awareness, research, and education, and exposes a persistent issue: the medical community’s longstanding neglect of M.E.

The video starkly reveals the consequences of this oversight.

The two patients featured live 40 miles apart which made recording together incredibly difficult—the project took 5 months, to eventually, navigate the many challenges they faced in the hurdles of meeting up for an hour and after weeks of scripting their message online.

Patients form deep friendships through unique shared struggles with M.E. and Long Covid, stigma, and disbelief. Facing skepticism and isolation, they find solace in each other—offering support, understanding, and validation in a way no one else can.

We know this may be difficult to watch. However, we hope our shared journey encourages healthcare providers and decision-makers to reflect on the added burden of stigma and disbelief.

Greater understanding will eventually lead to better care, compassionate policies, and much-needed research.

Thank you for watching, for listening, and for being part of this journey toward a better future. Rebecca & Joan
 
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