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.
Click to expand...

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:
 
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