The future and funding of UK ME/CFS charities

This thread has been split from
https://www.s4me.info/threads/jk-rowling-donates-£15-3m-to-edinburgh-ms-research-centre.11260/

And as I've said in another thread, since 2004, the MEA has been run by a small and relatively unchanging Board of Trustees who determine its policies and have considerable control over the organization's direction. There may be some key members of the BoT who might not welcome the type of staffing structure required to support a larger organization with a broader remit. I doubt it's solely a matter of lack of funds that has seen the MEA running without a CEO or equivalent senior position since Val Hockey took a redundancy package back in 2004.

 

Thanks for your comment and your replies elsewhere. I agree. As someone who is no longer a member or “supporter” as charities now call us, I’m not up to date with how democratic or transparent or aspirational they seem to members. The thing is, what does seem evident is that it is the charities as well as the illness community itself who are the ones who need to pull us into a better place of more reach, more community effort and fundraising etc and more campaigning.

 

Well, as someone who was denied membership of the ME Association, twice, in 2004, firstly via "Chair's Action" in between meetings of the Board of Trustees, and for the second application, following discussion of a minuted agenda item regarding my application at a Board of Trustees meeting, in which it was decided I was not a fit person to be admitted into membership of the MEA, I'm perhaps not the best person to comment.

 

This is an area where we could do a lot better, I believe, without all the challenging issues of running shops and the like.

 

Why were you denied membership???

 

Out of interest I looked up Parkinson’s uk who have income of about £35m/ year.

It is interesting to see how they spent £39m in 2018.


Like MS society they spent millions on raising funds, but more £10m on research, and significant funds on support and services :

 

(Unofficially) because the then Chair of Trustees and at least one member of the Board of Trustees had considered at the time that I was a political threat to the stability of the organization and under their Mem & Arts, the MEA has the right to deny membership to anyone whom it deems unsuitable to admit to membership.

I was however given no written reason(s) for their decision to twice reject my application and although I requested under the Data Act, copies of all information held about me by the Association on which they had relied when deciding whether to approve my application, this request was ignored. I was the first person to be denied membership of the Association.

(Note that applications for membership would normally be dealt with by the MEA's office admin staff and not considered by the Board of Trustees either between meetings of the Board, or placed on the agenda for discussion at a Board meeting, or via a "Chair's action" decision.)

The MEA subsequently made changes to its Memorandum & Articles of Association which govern how the charity conducts its business, via a membership postal vote and EGM, which included changes that would permit the Board to decide whose names would and would not go through to the ballot paper in its annual Trustee elections. They also changed the Mem & Arts so that in order to stand for election to the Board of Trustees, a nominee would need to be a member of the Association. (Whereas previously, non members could stand for election, but would be expected to become members if they were elected onto the Board.)

So now, if you are denied membership of the Association, you cannot stand for election to the Board.

[Edited to insert text: The MEA subsequently made changes to its Memorandum & Articles of Association which govern how the charity conducts its business, via a membership postal vote and EGM, which included changes that would permit the Board to decide whose names would and would not go through to the ballot paper in its annual Trustee elections.]

 

I would add that the MEA Board of Trustees has been happy to receive updates on ICD-11 and other classification systems for some years now, for which I receive thanks.

 

A merger was mooted in the period following the MEA's funding crisis during the 2004 post Val Hockey era, when it was touch and go whether the MEA could be kept afloat or would need to fold.

Not a cat's chance in hell, I would wager, of Dr Shepherd agreeing to a merger with AfME. The MEA is run by its Board of Trustees - they control its policies and direction and Dr Shepherd has been a Trustee/Director since 2003.

 

Tbh when dr S leaves, retires, because they don’t have a ceo structure, the chance of mea finding someone else and to work for free (I think that dr S was able to make up an income elsewhere but few can do that & Also even want to, dr s has ME himself ) are small. There was another group (yes another 1) called CFS foundation or something that folded when it’s lead passed away, obviously AyME folded too (to be taken in by its sister who always clsomec they wre separate) I suspect there might be a merger then but we need professionalism and growth and volunteers but Also an inspiring field and a campaigning field, very quickly. I don’t want to just keep on plodding on.

There are alternative possible mergers such as MEA & TYMES & meruk

There’s currently lots of essentially single headed groups 25%, TYMES, MEA, MERUK, BRAME some which also have small number trustees, all advancing in age, that have been going on the same for years.

 

With regard to legacies I think that Parkinson’s And dementia especially are in a much more favourable position than us because they are more end of life illnesses, they are degenerative ie you are going to die in a potentially bad state and as you decline in your 70/80s you might think about where to leave that wealth & house you built up in your healthy youth.
I’m an example of someone who’d got very severe by my twenties, have never worked seriously, live in a council house, won’t die possibly for years but will have nothing to leave anyway.
Obviously there are other many scenarios for cases and It’s worth Encouraging people in our community but our potential is less afaic.

AFMEs Facebook & Twitter seem to revolve around a hundred and one ways through any medium for the newly ill to explain that we are more than tired.

 

One would also have to consider that although there will be some overlap in membership between AfME and the MEA, there will be members of MEA who would not be prepared to join AfME.

 

The CFS Research Foundation (UK) was a research only org - not a patient org.

 

BRAME is essentially Christine and her daughter and BRAME does not run consultation exercises with patients and as far as I can see, when Christine or Tanya are present as reps of BRAME at meetings, like Forward-ME, or local services they are representing themselves.

The BRAME website doesn't appear to have been update since 2005.

 

But TYMES charitable objectives are specifically for children and young people and what exactly would they bring to a larger org?

31 May 2018 Income: £11,761

 

MERUK isn't constituted as a membership org.

 

I think the best chance would be a completely new membership org, independent of the existing orgs - but that would take time and £££££.