Bristol ME Support Group

03/06/2026

From Action for ME

🎙️Action for ME discusses ME research on BBC Radio Gloucestershire

Clare Ogden, Head of Support Services, highlighted this morning how the Sequence ME & Long Covid research project presents a ‘once in a generation opportunity that we hope will transform our understanding of these illnesses’ but there is a huge need for much more research funding for ME.

The accompanying BBC article highlights the impact ME has on people’s lives, the misunderstanding many people with ME continue to face, and how research funding is just ‘drop in the ocean’ compared to what’s really needed.

Read the BBC article here: https://www.bbc.co.uk/news/articles/c4g91y92j84o
Listen back via BBC Radio Gloucestershire here (2 hours, 6 minutes in): https://www.bbc.co.uk/sounds/play/m002wv09

03/06/2026

"“If we overload the nervous system, say with neuroplasticity training [or] cognitive behavioral therapies, then we’ll end up with the same problems that we did with physical exertion … If these were therapies that worked, they would’ve worked by now, the several trials that have been done would’ve yielded very convincing results. And we just haven’t seen them.”

We Must Free Long COVID and the Patients Living with It from the Mind-Body Trap

03/06/2026

From BBC News

People with ME say new government funding for research into the illness is "a drop in the ocean".

03/06/2026

From Action for ME

You can now register for our next Breaking Isolation Workshop!

This free lavender paper flower making workshop is for young people aged 14-18 and is a relaxed and fun space to connect with other young people with ME.

📅 When? Thursday 18 June, 3:30-5pm
💻 Where? Online via Zoom

The workshop will be hosted by Keely, our Family Services Coordinator, and Grace who runs flower making workshops. There will be a 10-minute break halfway through.

Find out more and register here: https://www.eventbrite.com/e/breaking-isolation-workshop-flower-making-ages-14-18-tickets-1990467194962?aff=oddtdtcreator

03/06/2026

From The Sick Times via the ME Association

Last year, researchers in Ontario, Canada started recruiting participants for a Long COVID trial testing the feasibility of exercise and rehabilitation. Like many other studies of exercise, it doesn’t use validated measures for post-exertional malaise (PEM). But the Pursuing Reduction in Fatigue A...

03/06/2026

Dementia UK: Fix NHS continuing healthcare Petition

"NHS continuing healthcare (CHC) funding can be a lifeline for people with long-term complex health needs and their unpaid carers in England. But many families are missing out this vital funding because the assessment process is flawed.

It doesn’t have to be this way.

Right now, you have a critical opportunity to help fix NHS CHC funding once and for all. The Casey Commission is currently developing recommendations to help the UK Government improve England’s social care system.

Together, we must make sure that transforming the NHS CHC process is a central part of the action plan that the Government develops."

You can read more and sign the petition here: https://bit.ly/4uP4yvw

The MEA's Healthcare 4 ME team recently delivered CHC training on Very Severe ME to nurse assessors within Thames Valley ICB - you can read more about it on our website: https://meassociation.org.uk/hghh

03/06/2026

A Step Forward in Recognition: New ‘Very Severe ME/CFS’ SNOMED CT Code

The ME Association’s Healthcare 4 ME (H4ME) team are pleased to share an important step forward for people with very severe ME/CFS in the UK.

Following an application submitted in January 2026, we can confirm that a new SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) concept has now been approved and published.

SNOMED CT is an internationally validated system to record clinical information in the patient record and aids in enhancing communication of clinical data across healthcare systems. It was rolled out across GP systems in England from April 2018, replacing Read Codes as the standard for clinical coding.

Until now, SNOMED CT included concepts for ‘mild’, ‘moderate’, and ‘severe’ ME/CFS, but had no equivalent for ‘very severe’ ME/CFS. This left a significant gap, because very severe ME/CFS is a clinically distinct category with its own specific care needs and risks.

https://meassociation.org.uk/9fcp

03/06/2026

From Anil about ME

This paper provides the a structured, transdisciplinary care guide for people with severe ME in home settings.

The guide fills a major gap in professional knowledge and supports both family caregivers and health professionals in delivering safe, stabilizing care for people with severe ME.

Great work. Thank you!

PS: I Google translated the document to English. The original German version can be found here: https://drive.google.com/drive/folders/1L4GhghirzZSzOCNzDCRVyjqE-L66Ixvp

03/06/2026

From Broken Battery

02/06/2026

From ME Research UK

Dr Hans Kluge, WHO Regional Director for Europe, delivered the opening address at the 18th 𝗜𝗻𝘃𝗲𝘀𝘁 𝗶𝗻 𝗠𝗘 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 International ME Conference ( ) - and was unequivocal about the nature of the disease:

"𝗠𝗘 𝗶𝘀 𝗮 𝘀𝗲𝗿𝗶𝗼𝘂𝘀, 𝗰𝗼𝗺𝗽𝗹𝗲𝘅, 𝗺𝘂𝗹𝘁𝗶-𝘀𝘆𝘀𝘁𝗲𝗺 𝗽𝗵𝘆𝘀𝗶𝗰𝗮𝗹 𝗶𝗹𝗹𝗻𝗲𝘀𝘀, 𝗶𝗻𝘃𝗼𝗹𝘃𝗶𝗻𝗴 𝗻𝗲𝘂𝗿𝗼𝗹𝗼𝗴𝗶𝗰𝗮𝗹, 𝗶𝗺𝗺𝘂𝗻𝗲, 𝗮𝗻𝗱 𝗺𝗲𝘁𝗮𝗯𝗼𝗹𝗶𝗰 𝗱𝘆𝘀𝗳𝘂𝗻𝗰𝘁𝗶𝗼𝗻."

He affirmed ME's classification as a neurological condition under ICD-11, and called on countries to adopt this consistently so that the true scale of the condition is properly recorded - and so that people with ME receive the recognition, diagnosis, and care they deserve.

Dr Kluge also commended the work of Invest in ME Research and our partners in the European ME Alliance for two decades of sustained commitment to biomedical research and international collaboration - bringing together researchers, clinicians, and advocates from more than twenty countries.

Twenty years on from our first conference, the WHO Regional Director for Europe is opening ours.

Thanks to our great supporters for making things happen.

Full press release: https://investinme.org/IIMER-PR-20260601.shtml