United Kingdom: ME Research UK (MERUK) News

From FB:

The latest episode of the Let's Talk SciComm podcast (bit.ly/3O6hiNE) features an engaging interview with Tina Katsaros, in which she talks about her PhD project on cellular energy abnormalities in ME/CFS, as well as the importance of communicating the results of scientific research. We are currently supporting Tina's PhD research at La Trobe University (meres.uk/LaTrobePhD).
 
From FB:

It is important that researchers learn to implement methods both to manage workload and to ensure personal wellbeing at the beginning of their careers, not only to prevent burn-out, but also to ensure that they are able to sustain high-quality research over time.

Therefore, in the third meeting of ME Research UK's Researcher Circle, students working on projects funded by the Charity learned about ways to work well, stay motivated, and maintain a 'work-life balance'.

Read more: https://bit.ly/4aG1mum
 
Thankyou. It also helped me to find the big clue - below - on the same page as Babesia and Bartonella (detected in almost half of a few "chronic fatigue" cases studied - not an ME/CFS cohort). This newsletter links that page as another February topic.

The big clue:

ME Research UK (MERUK) said:
NICE Roundtable meeting – New Date - 13 September 2021:
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Paul Chrisp said:
'Our aim throughout this process has been to use the best available evidence as well as the lived experience of people with ME/CFS to address and resolve the continuing debate about the best approach to treating people living with this debilitating condition.

'We remain optimistic that we can reach a way forward to publish a guideline that will have the support of people living with ME/CFS, the people who care for them and the professionals who treat them.'
Click to expand...

This is so notable because I continue to hunt - but did not yet locate - his subsequent statement that the NICE Guideline did conclusively resolve "debate".

I decided that is very true (however outlying contention & ambiguity will persist).

NICE does not preclude further involvement in problematical implementations.
 
Another clue retained by ME Research UK (MERUK):
News published 11 December 2025

Senedd Cymru/Welsh Parliament debate on ME – 10 December 2025

"Mr Price also asked for an amendment at the end of point 4 namely to

" 'develop a strategic approach to research by supporting Wales to host one of the five proposed UK hubs for collaborative translational research into pathological mechanisms that cause ME, long COVID and related post-acute infection conditions'.

"What is stiking is the proposed 5 hubs proposal which appears new. It was not in teh action points of the ME/CFS Delivery Plan.

"Is this movement to recogise the call by researchers, patients and charities (including ME Research UK) for a new co-ordinated and better funded research landscape?

"Certainly, Mr Price hoped a hub would be based in Wales".

And there was the question in Parliament answered by some Ministry for business-like technology etc. But so little hub news.
 
ME Research UK is delighted to have awarded funding to Dr Andrea Polli and Prof. Lode Godderis at Vrije Universiteit Brussel and Katholieke Universiteit Leuven in Belgium for a project investigating immune exhaustion in ME/CFS.

Together with PhD student Yanthe Buntinx, the team will explore whether the immune system in people with ME/CFS is exhausted by prolonged activation or whether it is inherently weaker and more vulnerable.

A better understanding of changes to the immune system in ME/CFS could guide the development of immunotherapies, an approach which has revolutionised treatment in other diseases such as cancer.

Find out more: https://bit.ly/polli071
 
Dolphin said:
whether the immune system in people with ME/CFS is exhausted by prolonged activation or whether it is inherently weaker and more vulnerable.
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I am not sure why we should think it would be either.
The applicant mention that some people with ME/CFS say they take longer to get better from colds and flu. But we have two decades of studies of immune cells in ME/CFS not showing very much. I would like to see more focus.

And even if people take a bit longer to get over colds, I am not sure how central that is to understanding what causes the ME/CFS synptoms!! That seems more likely to be immune overactivity.

But it is a t least good to see scientists taking an interest.
 
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