United Kingdom: ME Association governance issues

Still no announcement of the December AGM on their Twitter/x feed. Has anyone received the magazine today?

 

It's a challenge, but that doesn't mean it can't be addressed. Same as all access issues: if the will is there to do it, a solution can be found.

In some respects it's similar to board representation for people with learning or communication difficulties. They may need an advocate to support them in a meeting or even to speak on their behalf, partly because it's a pressured, time-constrained situation that can make it difficult to formulate and express their thoughts as well as they'd like.

Processes have to be adjusted so that agenda items are notified well in advance, giving the person and their advocate time to explore them. If the advocate is to be the one speaking at the meeting, they are there to present the other person's thoughts and opinions, not their own. It's a skill that takes time to learn, but without it, those voices aren't heard in any meaningful way.

Charities could learn a lot from that approach, not only to enable better representation for people with severe ME/CFS, but also to enable them to job-share as trustees with someone with more capacity.

 

Close to 300 people have now signed the open letter. Hoping they can’t just brush that off as reviewed, nothing to see here..

 

300 people have now signed the Google Docs letter of concern regarding Chair, Neil Riley's recent editorial.

https://docs.google.com/document/d/10JWitoNxMafyi7KeSO4pjoIpM51PH3bf3z0CWUdYOUw/edit?tab=t.0

Edited to add: You can also sign via this form:

https://docs.google.com/forms/d/e/1FAIpQLSeeRm06yjKuVJz5LPaQYPePcbQKZlGWPHcAt8_6fkw80-U8mQ/viewform

 

It's a very good letter, too.

 

Anyone looked at the MEA FB page today? I’m not sure I dare..it’ll rile me either way, I suspect.

 

I'm too ill to read the thread, so pls forgive me if i repeating what is all old news now, but i only just a few days ago been able to read a little of my latest ME Essential magazine. It's got one of the most offensive ridiculing editorials I've ever read, on page one.

I'm sorry i cant copy it here but perhaps someone can find it if not already discussed. I surprised not to see it but I scanned thread but recent posts seem to be about something from 2019, a fb post & the AGM ? Apologies f it already here, if not it must be all over other social media, surely. It seem really shocking to me.

The article I'm takling about seems like a passive aggressive dig at us at S4, & people like us, & has tired old 'motivational' cliches. Its nauseating.

I am in tears. I so ill supposed to be off social media but i had to come on, to make sure you all aware and to remind myself that people who understand, still exist.

It took me 10yrs to show my Mum that dragging myself out of bed when i felt much too ill & going for a little walk (which despite the ideas oin the piece, is what most of us are naturally wanting & trying to do), was only making it worse.

I hope no one who supports me reads it. I currently am so ill i can barely stand & if i could get out there in the sunshine, i would.

I thught i'd have a little read, just one page, its usually a comfort, & instead i feel shocked & hurt.



I mean 'what the actual....'

Hugs to you all, i miss you



Edited: to remove an irrelevant name

 

If you mean an editorial by Neil Riley, yes it's on this thread and another thread. My understanding is that this was in last month's magazine.

The next magazine is due any day as it needs to contain all the AGM and postal voting stuff for AGM on 9 December.

 

It has the title "Animals need to move", right?

Then it's what is being discussed starting here:

An Open Letter has been created -- see this post:

Hope it's OK to copy the Open Letter's text here:

 

oh, duh, sorry to be so out of it. This mag i reading is autumn 24

yes thats it thank you. Sorry i missed it making effort for people thanks pointing it out.

Thanks for the link. I too ill to read open letter atm, will see if can get to it. right now i just happy others are not happy about it & someone is doing something I have to sign off get ready for another docs appointmnt.

Thanks everyone

 

As well as the Google Docs Open Letter which you can edit to add your name if you have a Google address, there is alternatively a form that can be signed:

https://docs.google.com/forms/d/e/1FAIpQLSeeRm06yjKuVJz5LPaQYPePcbQKZlGWPHcAt8_6fkw80-U8mQ/viewform

The form requires an email address, plus your name, but it doesn't say it has to be a gmail address.

The Open Letter has reached 343 signatures now.

Take care @JemPD and hope the doctors appointment goes well.

 

If you are thinking of signing the Open Letter, Alex is planning to send it to the MEA tomorrow, on Tuesday 19th, at 1200GMT.
https://twitter.com/user/status/1858523270003257528


Alexis @alexis___me
I'm going to send this letter to the @MEAssociation tomorrow afternoon so if you'd like to sign alongside the 214 people who have so far, please do before 1200 GMT on Tuesday 19/11/24. Many thanks.

--------------------------------------------------------------------------

 

100% agree - and agree that it feels encumbent on charities to be leading the way, otherwise how/why on earth is anyone else going to start doing it for pwme if even their charities don't

It also raises another issue, a side one but also not a side one. Advocates seems to be a massive issue for ME/CFS, and yet are one of the most important gateways to accessing anything, changing anything and protecting people. It's one of those catch 22's that probably somehow underlies everything - if you don't get a voice then you get spoken for and nothing changes.

Actually is unbelievably important

Yet even for people attending one of these meetings then what could it be under the costs that advocates are paid for to allow proper access. And I guess as you've said it would need to be a good amount of time to enable agendas to be read and responses communicated bit by bit, but also even before all of that the advocate to understand the individual's condition and limitations/other committments and ways of working etc.

unless I'm missing any condition-specific advocates either locally, regionally or nationally that still operate. Maybe it is different in other areas, but literally it could be then anyone who needs an advocate who doesn't have one as a family member would be relying on who? The 25% group? I'm not sure that Action for ME still have them and that wasn't normally speaking for someone but a drawn out process of helping someone write something.

So not only is the condition-specific availability not there as there is for some conditions.

And the 'state-based' resources - well what are they like? I'm not sure there is anything that would cover these contexts?

And then for other 'general' resources there is something unique ME/CFS-wise in that it isn't just not know but the misinformation is a problem, particularly for the more severe + how they present. And how you convince people that they've got the wrong idea of the illness, not you, when you get increasingly more exhausted and look 'less reliable' by doing so.

Can there be any programmes of education specifically looking for those from other organisations who are 'open to' being educated, then of course it would need to be a good job of somehow covering all they need to know. But also there is the accessibility issues of some places that is a unique issue for particularly severe ME/CFS. And the extra time or additional processes needed due to the disability, but also the fact that many things people might need help advocating for will involve things like debunking misinformation, assumptions and processes that are based on eg physical disability models and involve a lot of explaining to convert into a PEM type model. So I can see somewhere that works on a x amount of time per person/issue basis being a real problem to convert.

- it reminds me of grocery deliveries where I was told by one company that it was best to ring them to put a note about additional needs because it meant the store manager knew it was to do with disability and would officially allocate extra time (and from who turns up I think appropriate people or it's a 'hands up' and those who prefer those rounds tend to do it) for said deliveries.

 

Does anyone know if Charles Shepherd has commented on the article by Neil Riley on Facebook or elsewhere?

Reading Riley’s article makes his response to the open letter about PROMs led by Sarah Tyson less surprising than it was to me at the time.

Echoes of Colin Barton. I can’t see how Riley’s position is tenable unless members want to go in the same direction as the Sussex and Kent ME/CFS society.

Frustrating that MEA seems to be going backwards now that AfME seems to be moving in the right direction under Sonya’s stewardship. I despair.

 

Did have a quick look earlier and there were a few comments on a recent FB post but nothing back. Suspect they all have their tin hats on, hunkered down, waiting for the grenades to stop.

 

There is a separate point that some others might be able to help me out with.

Yes it's clear now that much of this 'new' article is from one that was old-fashioned in 2019 but at least better-contextualised (interestingly also poorly received, as was potentially the criticism by the looks - so it feels like a double-down)


But... the title is new?

And 'Animals need to Move'

Well it is ringing a big old bell with me. Someone has said it as a one-liner they thought was clever somewhere recently?

Was it on social media? I seem to remember it being said with gusto as if someone thought it was a new clever one-liner or riposte to something. Who was it? Anyone remember?

The 'animals' bit of it is pretty distinctive to remember hence I assume that's the original source (although we know how advertising works and of course the same person doing it on social media or an article might be saying it in person all over the place) so I'm interesting in remembering who it was that was saying that one-liner

 

The #ThereForME campaign apparently received a response from MEA which they thought inadequate, and so are suspending their collaboration. Here's a direct link to an image of the statement.

Twitter thread: https://twitter.com/user/status/1858613330673361222

 

This is a PR cluster**** for the MEA and it’s entirely self-inflicted. Wonder how this will play out now, can/will they dig in, time will tell, but the longer they go without acknowledging the problem, the worse it gets.

 

Good for #ThereForME for taking a stand.
At the moment our best advocate seems to be Sonya, except that’s a conflict of interest with her position. And maybe the same with Charles Shepherd.