United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

Nightsong said:
www.actionforme.org.uk

Learn about ME: improving professional practice in healthcare

Action for ME and partners (Dr Nina Muirhead, #MEAction Scotland, Long Covid Scotland and the ME Association) are hitting the conference trail...
www.actionforme.org.uk www.actionforme.org.uk

Not sure if we've taken a look at the resources they're going to be sharing other than the module - there are podcasts & webinars.
Click to expand...
The webinars are LONG. Around an hour each. I can’t see them being watched by many. Patients, doctors or policy people.

Good to see them trying to get the word out on the conference trail though. Would be even better if they printed out and shared our fact sheets too! They could be a good entry point for people as they’re quite concise compared to the podcasts and videos. Worth trying any contacts people here have to see if they would?

These offer healthcare professionals knowledge and information that can increase their confidence in diagnosing and managing the symptoms of ME.
Click to expand...
I understand the wording and am being picky to make a point, but I’d like LESS confidence from healthcare professionals. More humility and acceptance of what they don’t know or understand would be a great place to start from IMHO.
 
hotblack said:
I understand the wording and am being picky to make a point, but I’d like LESS confidence from healthcare professionals. More humility and acceptance of what they don’t know or understand would be a great place to start from IMHO.
Click to expand...
This. Admitting ignorance and uncertainty is the starting point of wisdom and competence.

It is quite disturbing how quickly some seem to think they can gain a genuine understanding and competence in this field, based on so little understanding, on non-existent therapeutic options, and so much persistent failure.
 
www.justgiving.com

Charlies ride from Lands End to Bristol for M.E.

Help Charles Sleep raise money to support Action for M.E.
www.justgiving.com

Starting tomorrow, a father with a son with very severe ME rides 450km from Lands End to Bristol.


Charlies ride from Lands End to Bristol for M.E.​


Charles Sleep is raising money for Action for M.E.​
£3,329 raised of £3,500​


Story​

My son Tomos has very severe ME. After years of deterioration he became bedbound in Christmas 2023, and he has been in bed since then. He needs help with all his daily needs. There are thousands of people in the UK suffering from severe ME. Although people can get better, for those with severe ME it is a long and slow road to recovery. These people desperately need effective research and ultimately treatments for ME.

So starting on 21st September myself and my mate Jonathon Steer are cycling 450KM from Lands End to Bristol to raise money for Action for ME, a UK charity who have been instrumental in bringing about important research towards understanding and developing effective treatments for ME. Why are you not cycling from Lands End to John O'Groats I hear you say? I could say because we are old and knackered, but no, all good things come to those who wait! This is the first leg of an epic journey. Our other co-conspirator, Jan Chmiel has unfortunately had a serious parting with his bike at speed, so can't join us for this leg of our journey: get well soon Jan.

Action for ME say "Our mission is improve the lives of all people affected by ME. Better meeting their needs today, while taking action to secure change for tomorrow. We provide practical day to day support, holistic healthcare services as well as fund breakthrough research and campaign for change. Help us work towards a future where everyone with ME receives the understanding, equity and care they deserve"

Funds raised by this appeal go directly to the charity, Action for ME
Click to expand...
 
centralbylines.co.uk

Long Covid research needs a more critical eye

A reader questions whether research into Long Covid treatments is being presented responsibly, warning that weak evidence could raise false hopes or cause harm
centralbylines.co.uk centralbylines.co.uk

Excellent 240-word letter to what appears to be an UK based online magazine:

Long Covid research needs a more critical eye​

A reader questions whether research into Long Covid treatments is being presented responsibly, warning that weak evidence could raise false hopes or cause harm​
​
Dear Editor​
​
I was disappointed to read “Finding ways to help recovery from long Covid” by Victoria Cairns because it focused mainly on one research paper of dubious quality without considering wider issues.​
​
In discussing the vagus nerve theory and related purported treatments without referring to the many other biological mechanisms implicated in Long Covid or the limitations of research, Cairns risks exposing patients to, at best, misplaced hope and, at worst, harm.​
​

 




Recent photo at the NHS. Over 6 years into #COVID, and we still have “wash your hands” under “AIRBORNE PRECAUTIONS.”​
​
We are failing hard to communicate one of the most basic lessons of this pandemic: Airborne means spread through the AIR. Clean air is infection control.​
​
​
[Text on poster]:​
AIRBORNE PRECAUTIONS​
STOP​
Please wash your hands before entering the training rooms.​
Thank you.​
​
​

 
It's clear that the services for people with ME/CFS in York are pretty terrible, with the NICE Guideline seemingly having had little effect. It's hard to understand why the MEA is not doing more to make things better. Instead, it seems to be using scarce donor funds to prop up the rehabilitation industry and clinics.
 

Warnings of “catastrophic” impact on medical researchers as some rates fall below 5 per cent

There was a sharp drop in grants awarded by the Medical Research Council in its last round of applicant-led funding, with success rates in some areas below 5 per cent, analysis by Research Professional News has found.

Researchers have described the numbers at the MRC as “catastrophic” and raised concerns over lasting impacts on the UK’s medical research community.

Earlier this year, RPN revealed that the MRC was expecting to award significantly fewer grantsthan usual through funding calls that closed in September 2025. At the time, the research council had paused its applicant-led opportunities while it overhauled its grant schemes.

Analysis of data published in September 2026 by the MRC confirms that only 26 grants were awarded across the council’s four subject-specific funding boards after the boards met in spring this year. The average number of grants awarded in previous rounds taking place in 2024 and 2025 was 47.
Click to expand...
 
www.wames.org.uk

MEVW webinar 5: Swansea Bay UHB, 2 Oct 2026 - WAMES

Discover how NHS Wales supports people with ME/CFS: self-management webinars Swansea Bay Health Board’s Adferiad Service will be talking about how their service can support people with ME/CFS to self-manage....
www.wames.org.uk www.wames.org.uk

MEVW webinar 5: Swansea Bay UHB, 2 Oct 2026​

Discover how NHS Wales supports people with ME/CFS: self-management webinars​

Swansea Bay Health Board’s Adferiad Service will be talking about how their service can support people with ME/CFS to self-manage.

2 October 2026

12:30–13:30

With Swansea Bay’s Golau Adferiad Adult & CYP Service



Register online here​

and the link will be sent to you once registration is complete and again an hour before the event begins. Registration closes 9am Fri 2 Oct.

Eng-MEVW-webinar-Oct-2026-560x700.jpg

This is the 5th in a series of lunchtime webinars shining a light on what support people with ME/CFS can expect from NHS Wales.

Each session features an in‑depth presentation from an NHS service team, followed by a Q&A. You’ll be able to submit questions before, during, and after the session, and the team will answer as many as possible during the hour.
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom