United Kingdom: ME Association news

The Sick Times - Advocacy groups suspend ties with U.K. charity The ME Association over chairman's op-ed

Quotes:

Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalomyelitis (ME) should increase their movement, counter to research and people’s lived experiences.

People with the disease say Riley belittled the reality of severe ME and made statements that go against the science of the disease.

...

Many people in the ME and Long COVID community were not convinced by Riley’s follow-up statement or of the ME Association’s handling of the criticism.

“His ‘apology’ can be pretty much summed up as ‘sorry, not sorry’”, Alexis Gilbert, the organizer of the retraction letter, wrote to The Sick Times. “In his statement he apologies if he caused “undue upset” suggesting he thinks the reaction is unjustified and over the top.”

...

The Sick Times has reached out for comment from Neil Riley and the ME Association but has not heard back from the organization at the time of publication.


https://thesicktimes.org/2024/11/22...rity-the-me-association-over-chairmans-op-ed/

 

The MEA's silence and inaction is only escalating what is now a major crisis of confidence in the MEA.

Reading Neil Riley's words again - he sounds like an overgrown schoolboy gleefully seeing how far he can push the boundaries of his behaviour.

 

I think it’s lovely that such beneficent elders bestow their “n=1 I know everything” knowledge upon us. Looking forward to him giving out lottery numbers next!

 

This damaging 'story' will be in the nationals next. The MEA should have reigned in Neil Riley in 2019. His childish arrogance and stupidity will just revive 'controversy' about exercise for ME. He has undermined NICE. And taunting sick people is the lowest behaviour. What is wrong with him?

 

You would think so, but the longer this goes on without a meaningful response beyond his sorry, not sorry statement, the more this makes me picture a scene at the MEA offices; Riley frothing at the mouth shouting ‘I will not be cancelled by this woke, angry mob’ with spittle flying everywhere, whilst stamping his foot (which ironically causes PEM as a result of his movement). Meanwhile CS and other trustees aren’t calling 999 to get the fire brigade for the building that is burning around them.

Ok, my mind went a bit wild there, but, if the rest of the board was going to do anything about it they surely would have by now? Which is potentially even more damaging in many respects because it suggests some approval/agreement with what he wrote in both instances and wrt the statement this week. Or they simply don’t see the damage that is being done to their reputation.

I do feel for the staff who are not going to be immune to what is going on, their poor social media person must just see their notifications going ding ding ding all day knowing it's another angry person with ME shouting at them.

 

Sorry, but given the response that I got from Charles when I reached out to him regarding Tyson's insults to the community I believe that this would be a complete waste of time.

 

The MEA have closed down the comments facility on all but a couple of their FB and twitter/x posts. Bunker behaviour. People with ME don't shout at social media managers, part of whose job is inevitably handling any influx of comments relating to their employer's cock ups (whoever their employer is).

 

Sorry to keep harping on about this, but things are getting really tight for posting out notice of the 9 December AGM.

If the magazine plus AGM related materials does not arrive today, but arrives Monday, that will leave only 13 clear days' notice (it's meant to be 21 clear days).

If there is a postal ballot this year for trustee elections or for voting on resolutions:

"All postal votes must be received by the company at least seven clear days before the holding of an annual general meeting takes place. Any votes received after that time shall be deemed null and void."​

One year, the printers failed to mail out some of the magazines so an EGM arranged for 28th June 2005, which the board had called inviting members to vote on a number of proposed changes to the 2001 Articles of Association, had to be cancelled and rearranged for 3rd September. I hope no-one had already booked transport or made carer/escort arrangements.

Extract from 2005 letter to members:

​

The full rescheduling letter is here: https://dxrevisionwatch.com/wp-content/uploads/2024/11/mea-egm-letter-1.pdf

I have now raised several questions re this AGM on ME Association Twitter/X. I am not anticipating a response until next week - if at all.

From barely quorate AGMs held in difficult to get to locations to cock-ups with the printers and delays in sending out of notices, this board has form for poorly run meetings.

 

He appears to have no idea.

No idea how ME/CFS affects some people.

No idea what other, less privileged lives are like.

No idea how to communicate ideas.

No idea how to manage public relations.

No idea how precarious the moment is in the battle against BPS ideology.

No idea how many sacrifices people have made to get here.

No idea how easily the ground gained after an appalling tragedy and the efforts of a grieving family could be lost.

In other words, he appears to lack many of the key competences for the job.

 

there are several threads with discussions on possible mergers, problems with the existing charities, and this fairly recent one on governance issues particularly relating to MEA (see also tag 'mea').
Members only - Governance issues with UK ME/CFS charities | Science for ME

 

I suspect the MEA are going to do nothing, based on recent behaviours I think they are wrong and strong.

 

Agreeed. And as part of this looking at the way the trustee role is designed vs other norms. It should perhaps be operating primarily as scrutiny and checks/balances and therefore include those who know the ins and outs of ME and the issues and thereby shouldn’t be a bigger load than for normal trustee roles as that just makes recruitment based only on the wrong things (people who’ve enough heakth time snd finance to offer all that)

I’m also wary of the ‘doing’ bit always being something that adds or makes life easier for staff vs normal trustee role vs staff set up.

plus of course whilst you don’t want to go too far the other way there is a worth/respect thing being set of pwme and charities having to be run on a lot of people who can give goodwill (and often you get some saints but also such goodwill often comes with caveats of what to them it looks like of what they want to ‘offer) . We need patient voice to being backed up by solid staff with enough energy and clout to do so not everyone being exhausted doing their best with a shoe string - the points about the situation changing in the motion are relevant.

 

And for those even worse you could potentially replace the word idea with the word ‘interest’ for each of them which makes it more concerning about who is then being served.

 

I don’t think that now is the time as a merger if it ever happened would need to be done once you’ve got some sort of sorting out done re who is in charge and representing each in order to maintain what needs to be and have sensible discussions that make the best of any assets or obligations etc

Ie bith need to have a sensible voice for it to be equal and things being in disarray fir one could make things hard to make work and have affects on the process

 

Yeah, I agree. The time may come, but it'll probably be clear when it does. For instance, if charities need to join up because there's a treatment or a service they could offer if they consolidated their resources.

At the moment, it's more about advice, advocacy, and fending off the crap. There are differing opinions on what needs doing and how best to do it, and perhaps we are better with more than one approach. Especially as it leaves us with options if one goes bad.

 

I agree @bobbler - I think a charity merger could be a disaster. As neither Charity has any mechanism to ensure they actually **Represent** the ME Community, as opposed to **Presuming** to represent the ME Community.