The future and funding of UK ME/CFS charities

Extracts from ME Association's governing document (its Mem & Arts):

http://www.meassociation.org.uk/wp-content/uploads/Articles-of-Association-of-Myalgic-Encephalopathy-Association.pdf

Directors’ general authority

6. Subject to the articles, the directors are responsible for the management of the company’s business, for which purpose they may exercise all the powers of the company.

Members’ reserve power

7.
7.1. The members may, by special resolution, direct the directors to take, or refrain from taking, specified action.
7.2. No such special resolution invalidates anything which the directors have done before the passing of the resolution.

(...)

Directors to take decisions collectively

10. The general rule about decision-making by directors is that any decision of the directors must be either a majority decision at a meeting or a decision taken in accordance with article 11.

 

Note that I cannot find any Summaries of MEA Board of Trustees meetings published after 2013.

It might be worth enquiring where these might be found on the website or if the previous policy of posting summaries of meetings has been since been changed and why.

[Edited to add: I've enquired (via Twitter) re summaries of BoT meetings.]

 

MEA replies (click to unroll full response from MEA):

https://twitter.com/user/status/1174988118350602240




Dx Revision Watch replies:

https://twitter.com/user/status/1174996938787368961

 

https://twitter.com/user/status/1174998859485011968

 

Thanks for your detailed reply and supplying all this information. I’m afraid I seem to have set off a volcano in my brain currently but hope to be able to read through items in the future.
I do think getting any change is going to be nigh impossible. I note we are an illness with the whole system in uk across many domains mistreating us and with 2 main charities who both have decided that generally that they will look to alternative means (negotiations with establishment on their terms) versus engaging and facilitating patients in campaigning and that is unfortunate.

I note in the snippets I watched or read from Heidi CEO of emerge Australia discussed on this forum, that they had a PAG and I think that thats a much more favourable inclusive way of operating but both our two will probably claim they are too small/underresourced to operate that way.

 

An old discussion, but the issue of competing and overlapping UK charities and membership orgs won't go away without active measures. I know some of the history of conflicts, betrayals, splintering, new betrayals etc. Also, I'm aware that the psychiatric takeover of ME caused a lot of those conflicts.

Generally, I've learned that NHS staff don't like activists or patient reps even though they are required to invite them to the table. This is not related specifically to ME. In various work projects I was warned against activists by ADHD, AIDS and autism clinicians. The refrain was always that they're stopping them doing their jobs. And as they do have to listen these days, they want to deal with a single organisation per illness, just because it's less complicated.

So, now that ME is moving out from psychiatric control at last, is it time for change in the way the ME world organises and represents itself? With priorities such as information and education, benefits advice and support, child protection, and research, would a single more powerful org be best placed to cater for all these and other areas, and best able to raise funds?

 

Perhaps something will evolve out of ForwardME?

 

Would be nice, but Forward ME has been around for a few years and the comments from a year ago in this thread didn't seem very hopeful. And I believe #MEAction has split from it recently...

 

Not sure if I have already mentioned it in this thread but bigger charities mean more paid people and less influence of patients and carers which has certainly caused problems in the past. Also there can be quite a lot of turnover of paid people so there can be lots of new-ish people doing jobs.

 

The psychs and their supporters will be fighting this, as hard as they can, to retain their careers and income streams.

My thoughts at the moment is that collaborating where we can, is the current best approach. For example with DecodeME and the PSP and "networking", so that we find people who have the capacity/knowledge and skills for particular roles.

Trying to get healthy allies involved in the fight is also key. Hopefully with new Guidelines, alongside significant publicity and dissemination of the fact that there has been a huge U-turn in understanding and approach to ME this will be easier to achieve.

I've heard the roles of the various charities, being compared to an ecosystem.
There are specific roles eg Tymes Trust and their role in protecting and advising families, S4ME providing discussion of science and input where we have the capacity eg NICE, MEAction UK organising Millions Missing and other advocacy, able to respond quickly to relevant matters as they arise and keep pressure on. Their Scottish contingent have made great strides with their devolved Parliament.

A couple of the smaller charities are struggling and who knows what will happen with the MEAssociation when Charles Shepherd wants to retire, or Forward ME when the Countess of Mar decides to hand over the reins and spend more time on her farm.

 

Don't think you did, but yes that's always an argument against large orgs such as Oxfam. On the other hand, Oxfam is highly successful in attracting funding for its campaigns. Also, since a lot of the thread is about whether orgs have membership or not, some pwME I speak to are clear they don't want to be members - they want effective treatment.

Yes, DecodeME and PSP are great initiatives. I agree with your other examples, and recognise that specialised guerrilla units are appropriate to fight injustice. Maybe resurrecting this thread is premature. But if NICE changes things as much as it ought to, I hope the battles for recognition and protection will eventually be won. And then it will be time to consider the best structure for raising awareness and getting funding for education and research.