United Kingdom: ME Association news

V.R.T. said:
What efforts should we be making to tbat end?
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It depends how it unfolds, I guess, but one of the things we could think about is anticipating replication trials carried out by teams who might assume they can lift methodologies over from other diseases. But of course inclusion of severe patients is a lot more complicated than usual, and mild/moderate ME/CFS is variable enough that pre-trial monitoring of participants and long term follow-up is essential, otherwise you can't show whether anything has changed.
 
Felis Catus said:
When I saw them, they couldn't prescribe anything. I don't know how it's now but they used to send a letter to the GP with suggestions. My NHS GP is not keen on off-label prescriptions, so I guess I could've spent more money to see a private GP and then some more to pay for medications.
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Ah, I never got that far into the process. They promised things to my family and got hopes up, then I spoke to them and there were loads of red flags like them refusing to make any accommodations for my needs so I stepped away. I can see it being a money pit for desperate patients.
 
Kitty said:
But of course inclusion of severe patients is a lot more complicated than usual, and mild/moderate ME/CFS is variable enough that pre-trial monitoring of participants and long term follow-up is essential, otherwise you can't show whether anything has changed
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Agree this is another concern. We needed good services with good support to do trials safely and ethically. An app to flag a problem is not good enough when your support needs go through the roof from side effects of a medication and your quality of life is significantly worsened.
 
Kitty said:
It depends how it unfolds, I guess
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I think I might be arguing for saving our energy as well.

If there is any spare capacity, it might be best invested in looking at how to put together our website. We can say what the charities might not be able to: that we know almost nothing about ME/CFS and there is no treatment or useful therapy, but recently ill people may encounter practitioners pretending otherwise. Caveat emptor.

Also, to researchers: we're an experienced and very capable patient resource. You're welcome to read and join in our discussions, but here's the executive summary in case you don't have time.
 
bobbler said:
There are doctors like Dr Luis Nacul and the Suffolk and North East Essex Service who are caring for people with severe ME/CFS in accordance with recommendations in the NICE guideline

Dr Nacul organised a half day training session on ME/CFS last week for trainee GPs - where I gave a presentation. We had over 80 trainees present and the feedback was very positive!
It can be done!
Dr CS MEA"
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Can we get a copy of Dr Nacul's training session, or at least the slides?
 
Jonathan Edwards said:
In the past my understanding has been that AfME get government funding. If that is still the case they may be in a difficult position.
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Charities such as Oxfam have government contracts and still manage to criticise and oppose Government policies where they think it necessary.

Also, if a charity was so dependent on government funding to the point that they felt as though they were unable to critique their policy decisions or to stand up for the interests of those whom they supposedly represent, they should be open and honest about that.

I have looked on the charities' websites, in their publications, even on AfME's forums and MEA's Discord, for any criticism of or opposition to the NHS clinics or the model they use. So far I have found absolutely nothing.
 
From FB:

The ME Association – Governance Review Update and Organisational Structure: February 2026

We're pleased to share the final details of MEA's new operating structure. This update builds on the feedback provided during an internal consultation period and reflects our commitment to creating a sustainable, effective organisation that can deliver on our mission.

Read more on the blog: https://meassociation.org.uk/0gfn

#MECFS #MEAssociation #pwME #MyalgicE
 
MEA said:
final details of MEA's new operating structure.
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"The Research Mananger (sic)

- will co-ordinate the activities of and report directly to the Research Committee (which reports to the Board of Trustees). This maintains the independence and integrity of our research function."

No-one needs to know who is the Manager co-ordinating the Committee and reporting to the Committee that reports to the Board.

Let alone who staffs the Committee. Maybe all very shy, or on job-share shifts, or rotating the maintained "independent integrity of our research function".

We only need to know who directs and who heads the other Departments.

To co-ordinate Committee actions and report to a Committee - does not sound like management. It sounds like administration. And secretarial.

I may be wrong. Co-ordinating an MDT or an executive charity committee - once convened - might not be the same thing in the field of charitable research.

Anyway it is simply impossible to finally name this Manager of a massive investment. Who manages research contracts and investments? Unidentifiable research managers only just manage committee co-ordination and a report.

Possibly this was writtten up by someone not familiar with the structure before and after. Then not yet revised by anyone in the know (as usual). I would like coherence not just a cobbling of words cobbled together.
 
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