Northern Ireland: News from Hope 4 ME & Fibro

2018
Hope 4 ME & Fibro Northern Ireland annual conference, Monday 17th September 2018
Livestream Tuller and Hughes 2 Oct 2018 Newry : The PACE Trial: 'One Of The Greatest Scandals
NI - Regional review of Neurology services

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

2020
'Children and ME' - Zoom meeting with guest speaker Dr Nigel Speight July 7th 2020

 

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/

 

This looks like agreat series.

They have had many good speakers at their events over the years.

 

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.

 

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

https://twitter.com/user/status/1440218087781847044

 

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.

 

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!

 

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

 

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.

 

For may 12th there is a conference on the NICE guidelines with input from the medical directors of both universities.

https://www.eventbrite.co.uk/e/deli...ice-guidelines-for-mecfs-tickets-522183343437

 

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

 

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

 

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.

 

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