ME Association's 2024 Annual Report released.

[PeterW]

Edit: Has anyone ever tried to diplomatically put this case to them? Is there someone we could contact who might be sympathetic? Dara especially seems like a no brainer to fund. Reputation mending for them, esp if it's postive.

Edit 2: How many millions do we think/know they are sitting on?

Yes, we first had a private meeting with them in around July 2022 up in their offices. The issues raised were disregarded, and (at their request) we kept that meeting confidential until last year when Charles Shepherd talked about it at the AGM (so I feel I am now able to discuss it).

Knowing that people sometimes take a while to face up to issues, we gave them 2 years to see if they would confront the issues.
It became clear this time last year that they were not doing so, so we started raising awareness on here and other ME Social Media platforms.

Around 60 people attended last year's AGM (a first, it has previously been virtually unattended), and pushed for change.
One of the key requests was a review of governance by an external professional, and to start spending their cash (they were sitting on around £3.6 million, while spending around £700k / year).

 

[PeterW]

A difference between the MEA and ME Research UK is the latter has supported lots of research outside the UK.

While the only study I can recall the MEA funding outside the UK is the LDN one in Canada. That is an unusual one as the researchers got money from the Canadian authorities for the trial but didn’t meet their recruitment target. That one is led by Nacul who worked in the UK for many years. So it’s unclear whether there has been a shift or whether the MEA will continue to basically only fund UK grant applications.

If the MEA were not able to find research to fund and did not want to fund international trials, one option would have been to hand the cash to ME-Research UK (or Co-finance projects under ME-R-UK's leadership). This is absolutely legal and doable.

 

[Kitty]

It is tricky because I guess if something becomes a service then there is the fixed (or otherwise endless) budget vs first-come first-served or 'assessing the most deserving' (which gets complicated when there are communication issues in an illness due to exhaustion, meaning such things could be an access barrier).

I doubt t the MEA has, or is likely to have, the funds to deliver services.* But they do have the capacity to develop models.

Severely ill people who land up in hospital would fare better if hospitals just knew what to do with them, and at the moment they don't. That's where working with a charity with the explicit aim of developing a care model—in partnership with some of the doctors who'll have to make the clinical decisions—could make a difference. There, part of the charity's role is be the interface between the care provider and the people who need the care.

ETA:

* Also, it shouldn't really be their role to deliver services for very ill people. Taxpayers are already paying for hospitals to do that; the issue is that care is not being delivered in the right way. That's a bone fide opportunity for a charity to drive change.

 

[Sasha]

If the MEA were not able to find research to fund and did not want to fund international trials, one option would have been to hand the cash to ME-Research UK (or Co-finance projects under ME-R-UK's leadership). This is absolutely legal and doable.

Would you say that anything useful has come out of MERUK's funding so far? I'm not sure it has.

 

[bobbler]

I doubt t the MEA has, or is likely to have, the funds to deliver services.* But they do have the capacity to develop models.

Severely ill people who land up in hospital would fare better if hospitals just knew what to do with them, and at the moment they don't. That's where working with a charity with the explicit aim of developing a care model—in partnership with some of the doctors who'll have to make the clinical decisions—could make a difference. There, part of the charity's role is be the interface between the care provider and the people who need the care.

ETA:

* Also, it shouldn't really be their role to deliver services for very ill people. Taxpayers are already paying for hospitals to do that; the issue is that care is not being delivered in the right way. That's a bone fide opportunity for a charity to drive change.

I was meaning 'services' in the general rather than health services or healthcare.

So even advocacy support or other kind of 'service' that might avert an issue or help in the situation those with very severe ME might be in was the general I was meaning, and the general problem I can see they might grapple with is how to take it from a 'service' model (where these are the issues I'd imagine) to something that could help that wasn't in firefighting / case by case type mode.

I would guess the theoretical 'educating the health care provider' is the hybrid, but we've discussed there is a bind there too.

I'd be intrigued how some other serious conditions (ideally ones that also have had a complicated time of it similar to ways me/cfs has, that they might have managed to slowly improve or make headway on) have cracked some of these and realistically what sort of budget is really needed to properly have a chance for each stage. And what strategy they might have gone at things with to pick battles and avoid david and goliath war of attrition/ drop in ocean that just gets ignored type problems.