United Kingdom: Action for ME (AfME) news

Launch of the PRIME ME/CFS Research Involvement Hub
18 May 2026
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We’re delighted to announce the launch of the PRIME ME/CFS Research Involvement Hub - a major new initiative placing people with lived experience of ME at the heart of research.

This exciting development marks a significant step forward in ensuring that ME research in the UK is shaped with, and by, the community it aims to serve.
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https://www.actionforme.org.uk/launch-of-the-prime-me-cfs-research-involvement-hub/

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UK Action for ME (AfME) launches PRIME ME/CFS Research Involvement Hub, May 2026
 
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I am wary about the idea of a charity like AfME developing 'healthcare services'. We do not know what healthcare to provide. It seems they do not know what to provide because any professional will do. It is all very well being dynamic but if you have no understanding of the evidence base for various modalities (i.e. mostly zero) the outcome seems pretty uncertain.
 
If they limit to diagnosis and correct information on the disease and how to manage with pacing they will drastically increase the quality of healthcare available to patients. This is really the value of these roles at the moment. Much of the country is a desert for basic diagnosis and correct services, most patients are surrounded by harm and having to hide from healthcare of all types completely unable to even get the code in their records or ever have their own thoughts on the likely cause validated in anyway.
 
BrightCandle said:
If they limit to diagnosis and correct information on the disease and how to manage with pacing they will drastically increase the quality of healthcare available to patients. This is really the value of these roles at the moment. Much of the country is a desert for basic diagnosis and correct services, most patients are surrounded by harm and having to hide from healthcare of all types completely unable to even get the code in their records or ever have their own thoughts on the likely cause validated in anyway.
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But what guarantee is there of any of that?
If diagnosis is wanted then you want a physician, and probably not a GP with an interest wantng a bit of cash on the side. And even the choice of physicians in the past by some charities has been less than ideal.

The correct information about the disease is pretty scanty and can be covered by a simple fact sheet. If you want to impart more nuance and perspective then you need a physicina with a good grasp of evidence quality. Not so many of those around it seems.

And I suspect that all we know about pacing is what can be put in an information sheet. Physios almost inevitably seem to convert that to pacing up.

Is it helpful to have a code in records - i don't know.
Should people's own thoughts on cause be validated? We don't know the cause so that seems unlikely.
 
BrightCandle said:
If they limit to diagnosis and correct information on the disease and how to manage with pacing they will drastically increase the quality of healthcare available to patients. This is really the value of these roles at the moment. Much of the country is a desert for basic diagnosis and correct services, most patients are surrounded by harm and having to hide from healthcare of all types completely unable to even get the code in their records or ever have their own thoughts on the likely cause validated in anyway.
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This 100%
I got a diagnosis in a well-written report by a GP via AfME years faster than the NHS could manage, very useful in getting benefits.
Beyond that I’m not sure what they should offer.

I mean actually years, I was on the waiting list to be seen by NHS ME/CFS for 3 years, to get a “comparable” letter with diagnosis was 5 years.
 
I was also diagnosed by a GP via AfME and got a good letter which served me well for what I needed it for.

My local service doesn't have a doctor in the team and they send you a 10 pages long form to fill in if you want to get their therapy-based support. I don't know what kind of letters they write and how are those perceived. I didn't have much luck with getting letters or good letters from the NHS.
 
Jonathan Edwards said:
How do you make a safe diagnosis of ME/CFS (rather than e.g. Hodgkin's Disease) without examining the patient?
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Maybe that's a valid concern but on the other hand how many patients have been examined by multiple doctors without getting any diagnosis? Like if I've been examined by my GP, multiple specialists and have gotten all kinds of tests. Yet if they refuse to diagnose ME/CFS or follow the NICE guidelines.. it's kind of nice if there's a remote specialist I can go to.

So I don't know what strategy they use to rule out other diseases but for most ME/CFS patients that's not really the problem..
 
Jonathan Edwards said:
How do you make a safe diagnosis of ME/CFS (rather than e.g. Hodgkin's Disease) without examining the patient?
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You can't, surely. Other possibilities have to be excluded, and that needs exams and blood tests. And time; reaching a diagnosis isn't usually a one-encounter process.

So it will still rely on local GPs who could just as well make the diagnosis themselves, as they used to. Which of course spared some of us all the GET/CBT nonsense.
 
I too worry about ME/CFS charities providing health care services.

I really really hope that whoever is selecting this doctor for the AfME service understands that there are no disease modifying treatments for ME/CFS. And so they will make sure that the new doctor does not intend to treat this employment as an opportunity for playing around with uncontrolled experimentation.

I wonder if we could ask AfME for a copy of the guidelines that they give the clinicians in their service?
 
The consultation lengths are substantial which does allow for a more detailed consultation than in many if not most other scenarios:

www.actionforme.org.uk

Doctor

About our Doctor service Please be aware that, given the high level of demand, there is a waiting list for this service....
www.actionforme.org.uk www.actionforme.org.uk

Fees for this service​

As a charity, we charge fees only to cover our costs.

Fees for specialist GP appointment from 1 April 2026:

  • Initial consultation by video or telephone call costs £398. This is 2 hours of a doctor's time with up to 1 hour face-to-face, followed by a comprehensive consultation summary report. Please allow up to two weeks to receive your report.
  • Follow-up consultation by video or telephone call costs £199. This is for 1 hour of a doctor's time with up to 30 minutes face-to-face, followed by a consultation summary report. Please allow up to two weeks to receive your report.
Some people may be able to get a bursary:
www.actionforme.org.uk

Bursary support

Current Status We are pleased to say that we are once again accepting applications for bursary support as from 1st April 2026. Purpose of Bursary Support...
www.actionforme.org.uk www.actionforme.org.uk
 
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Dolphin said:
As a charity, we charge fees only to cover our costs.

Fees for specialist GP appointment from 1 April 2026:

  • Initial consultation by video or telephone call costs £398.
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Hang on, that is quite pricy for a face to face (with an outstanding specialist attached to a university hospital unit) at a commercial outfit in Harley Street, as I happen to know from this last month's experience. How is this 'covering costs'?

Why is it £398 and £199 rather than £400 and £200. Medical services do not normally go in for supermarket-style pricing tricks.
 
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