United Kingdom: ME Association news

Very severe Myalgic Encephalomyelitis: Song in aid of the ME Association and Action for ME

Common Hill have released a song, ‘Still Here,’ about one person’s experience of very severe ME.


The person who wrote the poem and asked a friend to turn it into a song says, "I've been living with severe - very severe ME for almost 10 years. Everything I used to enjoy I can no longer do, as I am so debilitated by this illness. I have written a song, 'Still Here' about my daily struggles which few people would know about, to raise awareness for severe ME Awareness week."


Please support the ME Association and Action for ME as they campaign to make a difference for people with severe and very severe ME by engaging and championing the Government to implement points highlighted in the Delivery Plan on ME/CFS, in particular asking them to address the lack of an NHS hospital based specialist referral service for people with very severe ME.


‘Still Here’ is out now, and available on all streaming platforms.

Watch the Still Here lyric video
Donate to support the ME Association https://meassociation.org.uk/donate/
 
I feel bad asking because I think that this being done is wonderful. And they are asking for the right thing

but how specifically is MEA going to ringfence this to make a difference in the right way to those with severe or very severe ME/CFS?

Because we kind of need to know how that if they are working towards service might include severe but is that in a good way or is it going to make things even more worrying for those who are severe because it is BACME type ideas?

I'd like to feel that those who are putting themselves so far above and beyond that people can't imagine just to feel like they are doign something for the situation, have somewhere that is going to be taking just as much care in how it is then used. That are listening to those in what they do and don't intend it to end up on etc.

Which I know isn't that straightforward because of regs and keeping lights on and all sorts of things - and applies generally to other 'representatives' etc as well as places that people could donate to or help with: can they actually check they are being heard specifically and know what it results in.
 
Dolphin said:
From Facebook

H4ME Bulletin: New ME/CFS Service for Kent and Medway.

A new specialist ME/CFS service for Kent and Medway is due to open on 1 September 2026.

The service will support people with ME/CFS, from mild to very severe, making it one of only a few services across the country to provide specialist support for the severest form of the illness.

The new team has engaged with numerous stakeholders to better understand the needs of the local ME/CFS population.
Read more: https://meassociation.org.uk/mgop
#MECFS #MyalgicEncephalomyelitis #CFS
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This sounds very interesting.
Does anyone have any experience with the company Cora Health?

New ME/CFS Service for Kent and Medway​

By Karren Winters-Cavalot / August 18, 2026​
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We’re pleased to share that a new specialist ME/CFS service for Kent and Medway is due to open on 1 September 2026, with Cora Health having been awarded the contract.​
The service will support people across the full spectrum of ME/CFS, from mild to very severe, making it one of only a few services in the country to provide specialist support for people with the severest form of the illness.​
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The new team has engaged with numerous stakeholders to better understand the needs of the local ME/CFS population.​
The service will include medical oversight, home visits and an interdisciplinary team to provide joined-up care.​
Cora Health has also thought carefully about how to design its outpatient environment, including a low-stimulus pathway from the moment people arrive.​
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The service website will share MEA resources while Cora Health develops its own, and the MEA Healthcare Team is assisting with communications to local GPs and members of the public.​
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We will continue to communicate with Cora Health and look forward to seeing the service develop and provide much-needed specialist support for people across all severities of ME/CFS in Kent and Medway.​
 
MrMagoo said:
In the absence of a NHS severe service with associated guidelines, what guidelines will they be working to?
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My local ME/CFS service accepts patients with severe ME/CFS. From the little interaction I've had with them, I didn't think they were distinguishing it in any meaningful way from mild/moderate. E.g. I was sent videos which I couldn't watch and PDFs which would take me about a year to go through if I cut out all other meaningful cognitive activity in my life, including unavoidable life admin and messaging with people. They offered sessions with their therapy teams and asked me about sessions with their OT which I couldn't do without crashing.

Technically, they've ticked off all the boxes.
 
Felis Catus said:
I was sent videos which I couldn't watch and PDFs which would take me about a year to go through if I cut out all other meaningful cognitive activity in my life, including unavoidable life admin and messaging with people. They offered sessions with their therapy teams and asked me about sessions with their OT which I couldn't do without crashing.
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Presumably they also offer driving lessons to blind people, then write "We offered our service but the patient chose not to engage". :emoji_rolling_eyes:
 
Dolphin said:
From Facebook:

Research: New funding awarded to PhD project that will identify key metabolites and infection markers in ME/CFS

We’re pleased to share news of a new PhD project that is being jointly funded by the MEA Ramsay Research fund and the UKRI (UK Research Institute) that aims to accelerate biomarker discovery in ME/CFS by identifying unknown metabolites and uncovering evidence of infection.

Find out more about the project on the blog: https://meassociation.org.uk/snrw

#MECFS #pwME #MyalgicE #RamsayResearchFund
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New interview:

The ME Association: "Research: Spotlight on Aleyna: The PhD Researcher Using Cutting‑Edge Technology to Uncover New Clues in ME/CFS"

 
Aleyna seems good, and the parts of the talk talking about the chemistry work was fine. But, the parts of the talk relating to ME/CFS are not very solid. I'd have to go back through the talk to get precise examples.

From memory, there was the description of ME/CFS, with a lot of assumptions about multisystem effects, assumptions about what is going on in the disease e.g. neuroinflammation, dysfunctional energy metabolism.

And also, the project has 3 cohorts, two from Poland and one from Oxford. All three are intervention cohorts - before and after the interventions. The two Polish ones are an exercise therapy and cryotherapy. The exercise therapy was stepped around in the talk, but the cryotherapy is being described as a useful therapy, a positive intervention. And the Oxford intervention is PEM, that is described as a negative intervention. I think last time we looked at the Polish work, the selection of participants was questionable.

I think the chemistry work to identify currently unknown molecules will be done well, but a feel quite apprehensive about the analysis and interpretation. There was talk about finding a panel of molecules to make a biomarker, and of course we have seen loads of those before Hopefully there will be some requirement for validation in the different cohorts.

I'd like Aleyna to come and talk with us here. I don't know why the MEA doesn't have more input, to help researchers new to ME/CFS have a better idea about the illness and the necessary uncertainty.
 
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Hutan said:
Aleyna seems good, and the parts of the talk talking about the chemistry work was fine. But, the parts of the talk relating to ME/CFS are are not very solid. I'd have to go back through the talk to get precise examples.
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I agree that she seems to have a good grasp of the technology but the perspective on the disease is dire. The graphic at the beginning with all these things supposed to be wrong that we have pretty slam dunk evidence aren't wrong is dispiriting. Why is the science community still so hung up on all this non-existent stuff?

'Immune dysregulation' is just hand-waving anyway.

It would be good for Aleyna to interact here, I agree. Do we have to assume that young scientists who have been steeped in this empty rhetoric have to go on believing in it rather than debate worthwhile ideas as we do here?
 
I have thought recently that we need a 'biobabble' fact sheet, that explains the common memes and why they are either unproven or flat out wrong. I don't have the capacity to work on this though so would rely on others to pick up the idea and run with it.
 
Andy said:
I have thought recently that we need a 'biobabble' fact sheet, that explains the common memes and why they are either unproven or flat out wrong. I don't have the capacity to work on this though so would rely on others to pick up the idea and run with it.
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Much of this can be pulled together from here and ME/CFS science blog
 
The multi-system meme.

All I can say about the "multi-system" meme, is that I say:

- systemic
- a systemic impact
- each upset system upsets the others.. .

... but maybe "systemic" has a technical meaning reserved for something else. I'd rather suspect the psycho-social origin theory set out to avoid existing bio-medical terms and replace them while laying stake to our very own utterly butterly ineffable Big Bang.
 
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