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

[Lou B Lou]

Thanks for clarifying. Yes, I agree, ME/CFS should be considered for research funding on a level with other chronic disabling diseases.

Successive Health Ministers stated at APPG for ME meetings that ME should have parity with MS and MND for research and services. That was in the late 2,000s. Those Ministers are long gone and we still don't have parity for research or services.

 

[Nightsong]

NIHR:

"The Efficacy and Mechanism Evaluation (EME) Programme is accepting full applications for research looking into the treatment and management of post-acute infection syndromes and associated conditions, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

Opening date: 9 July 2025 at 1:00 pm
Closing date: 2 December 2025 at 1:00 pm

Overview | Research Specification

 

[Trish]

NIHR:

"The Efficacy and Mechanism Evaluation (EME) Programme is accepting full applications for research looking into the treatment and management of post-acute infection syndromes and associated conditions, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

Opening date: 9 July 2025 at 1:00 pm
Closing date: 2 December 2025 at 1:00 pm

Overview | Research Specification

Thread here

 

[Dolphin]

Welsh Senedd Debate on Severe and Very Severe ME - Action for ME

Welsh Senedd debate on severe and very severe ME. Contact your local and regional member of the Welsh Senedd to support the motion.

www.actionforme.org.uk

Welsh Senedd Debate on Severe and Very Severe ME​

11 July 2025



Adam Price, member of the Welsh Senedd (MS), has sponsored a motion for debate in the Senedd about provision for severe and very severe ME.

The motion has been tabled for consideration by the Business Committee which allocates debate slots. To give it the best chance of being selected, as many MSs as possible are needed to support the motion.

Severe ME Difrifol Cymru, an informal group of people with severe ME, very severe ME and their carers, have got together to support Adam’s motion for debate.

On Tuesday 15 July, the group will have a stall and display in the Senedd, in the Y Farchnad (The Marketplace), which is an opportunity to talk to members of the Welsh Senedd face-to-face about their cause.

How can you help?

If you live in Wales, you can contact your local and regional MSs to ask them to drop by the Severe ME Difrifol Cymru stall next Tuesday 11am-2pm in Y Farchnad.

You can tell them about the motion (SeneddMotion8884) and why it’s important to you that they put their support behind it. You can find out who your members of the Welsh Senedd are here.

 

[Hutan]

We have a thread to discuss the Coroner's Report on the death of Sarah-Jayne Lewis.

 

[Trish]

Some posts have been moved to:
UK Government Delivery Plan for ME/CFS, published 22nd July 2025

 

[Dolphin]

Despite the date on this I think it might be new.

https://buff.ly/QMBUGA3

Pulse Today 2,271 followers5h • 5 hours ago • Visible to anyone on or off LinkedIn
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'I can’t think of a single patient who has returned from a referral to a CFS clinic, a Long Covid Clinic, a fibromyalgia assessment or the CBT wing of a pain clinic – each for that "holistic" approach so important in these cases – and said, "That was really positive/helpful/constructive".'

Copperfield on why the biggest winners from ME/CFS clinics might be GPs, not patients
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Home Copperfield Neighbourhood ME/CFS care should energise GPs

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Neighbourhood ME/CFS care should energise GPs​

19 August 2024

Copperfield on why the biggest winners from ME/CFS clinics might be GPs, not patients

 

[Dolphin]

Copperfield has previously written negatively about ME:

https://www.meresearch.org.uk/wp-content/uploads/2012/11/UnhelpfulCounsel.pdf

“Never let patients know you think ME doesn’t exist and is a disease of malingerers. Never advise an ME patient to make a review appointment. At the end of the consultation, I say goodbye, not au revoir.” Dr Mary Church (a member of the BMA Medical Ethics Committee) quoted in the GP magazine, Pulse. 20th October 2001.

“Question: What would be your initial response to a patient presenting with a self-diagnosis of ME?

Possible answers:
a) Are you by any chance a teacher?

b) Thank you for making the effort to come along. I am sure we will be able to help.

c) For God’s sake, pull yourself together, you piece of pond life.

d) Well, lets just explore that, shall we?”

Dr Tony Copperfield (a pseudonym), described as being a GP in Essex, in Doctor magazine,
2000. (The ‘correct’ answer was (c).)

 

[Nightsong]

"Long Covid and the body: can we move beyond judgements?" - an article in BJGP by a GP with Long COVID:

https://bjgplife.com/long-covid-and-the-body-can-we-move-beyond-judgements/

 

[Jonathan Edwards]

"Long Covid and the body: can we move beyond judgements?" - an article in BJGP by a GP with Long COVID:

A sort of cold buffet of all the sorts of babble you can imagine might be served up - Philosophobabble, mind-body babble, Embodied Mind-body babble, embabbled mind-bobble, lived experiobabble, Greenhaulbabble, Scheibenbabble, Long-babble, Even Longer-babble.

Very suitable for a general practice journal.

 

[Sasha]

embabbled mind-bobble

Going to get a t-shirt with that on.

 

[Nightsong]

Copperfield Neighbourhood ME/CFS care should energise GPs
Copperfield on why the biggest winners from ME/CFS clinics might be GPs, not patients

Well, at least he is honest as to how "dissatisfied and disenfranchised" patients are, how little the clinics actually provide patients, and why GPs "oversell" them to their patients nonetheless.

If only there was a UK ME/CFS charity or major national organisation campaigning for an entirely different service model.

 

[Sean]

I think that view is a little uncharitable, @Jonathan Edwards.

Overall I think it is a reasonable piece, and a bit more of this kind of stuff might help open the eyes of a few clinicians, and give them some pause for thought in their daily clinical practice. Not everybody in the profession is a lost cause and beyond persuasion.

If only there was a UK ME/CFS charity or major national organisation campaigning for an entirely different service model.

Time for a new one to be set up?

 

[Jonathan Edwards]

Overall I think it is a reasonable piece,

Are we referring to the same article. The few hundred words I read were all complete woo.

 

[hotblack]

If only there was a UK ME/CFS charity or major national organisation campaigning for an entirely different service model.

That charities keep pushing for ‘more services’ is my one big gripe. We need to let the old services wither and die, or even better just shut them down, not waste more time, money and patients precious resources propping them up.

 

[Trish]

Are we referring to the same article. The few hundred words I read were all complete woo.

I got the impression they were trying to persuade that Long Covid is a disabling physical illness not psychosomatic, and needs to be taken seriously by doctors. For reasons only known to themself they decided that in order to get this straightforward message published and to persuade their colleagues of this message, they needed wrap it up in a mind boggling word salad.

 

[Jonathan Edwards]

I got the impression they were trying to persuade that Long Covid is a disabling physical illness not psychosomatic, and needs to be taken seriously by doctors. For reasons only known to themself they decided that in order to get this straightforward message published and to persuade their colleagues of this message, they needed wrap it up in a mind boggling word salad.

And the doctors will switch off long before they get to the bit that matters. Or worse, buy in to the embodied mind and send the patients to the embodiedmindist = psychotherapist.