United Kingdom: ME Association governance issues

bobbler said:
And it's impact on job-size if so vs chances of recruiting good candidates (if the norm is a committment half the size as trustee for other charities). Plus of course the added, but ever more relevant issue of this being an energy-limiting condition where experience with different severities also matters.

If you think of the direct relationship between that increased severity ('being qualified' by having that experience if you think in job terms) and reduced envelope or 'time to offer' if a carer (but not necessarily ability) then I suspect we have issues with ways of working almost implicitly making the most qualified the least able to access the role, for reasons that not only are not needed/priorities but aren't 'norms' necessarily.
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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.
 
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 :confused: ? 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.

:cry:

I mean 'what the actual....'

Hugs to you all, i miss you



Edited: to remove an irrelevant name
 
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JemPD said:
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 now 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.
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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.
 
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JemPD said:
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.
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It has the title "Animals need to move", right?

Then it's what is being discussed starting here:

Amw66 said:
The @MEAssociation published an article by their Chairman in the ME Essentials Magazine in which he condescends and mocks ME patients.

I’m utterly astonished that they felt it was appropriate to publish this.

Thank god I withdrew as one of their
'Champion Bloggers'.
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An Open Letter has been created -- see this post:

Dx Revision Watch said:
An Open Letter has been created on Google Docs:

https://twitter.com/user/status/1858303736323661971


Fran Haddock @franhaddock_

There’s an open letter here by
@alexis___me
, ppl can add their name (@ any letters & patient status) to the end https://docs.google.com/document/d/10JWitoNxMafyi7KeSO4pjoIpM51PH3bf3z0CWUdYOUw/edit
Also a draft complaint here to email individually just pls edit & personalise: https://docs.google.com/document/d/1DA8GACemuW6WZw_m_RJCzX2sif710w3Iz-F2HqWk-tg/edit… To: meconnect@meassociation.org.uk


Google Docs letter for adding signatures:

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

Google Docs draft complaint:

https://docs.google.com/document/d/1DA8GACemuW6WZw_m_RJCzX2sif710w3Iz-F2HqWk-tg/edit?tab=t.0
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Hope it's OK to copy the Open Letter's text here:

Dear ME Association,

We are writing to you as patients with ME, carers, and health professionals. We were shocked and offended to read the editorial comment from your chairman, suggesting that movement was required for improvement in ME.
  1. How was this comment allowed when it goes against everything we know about ME from the best science and research published and highlighted by your own team?

  2. How was this allowed to be published? Do you not have a fact checking system in place? Did it not occur to anyone in the ME association that this could be incredibly offensive and potentially dangerous to a large cohort of patients who are struggling with severe ME?

  3. How as a team do you continue to have confidence in your chairman when they present opinions such as this?

  4. How was there no consideration for how those with severe ME would be impacted by reading this?

  5. The columnist acknowledges (in a somewhat mocking tone) that this may cause complaints and yet, rather than present a balanced view, pushes on to overgeneralise from one person’s experience as to what others should do rather than basing their advice on science.
Not one of us shies away from maximising the movement we can achieve within the envelope we have but for many people they don’t have the privilege to rest or the privilege to be well enough to move at all. For some, the exertion of opening their eyes or digestion is too much.

Those who get better and improve in function are to be celebrated but surely we must also resist the urge to assign causation to correlation as in this case. Some people get better not because they decided to move. Rather, they got better, then they were able to move. We know from the excellent science and research summary your team publishes regularly that rest, not movement, is key to improving function. In time this allows movement to be reintroduced, but it’s so key that it’s this way round.

We would expect this level of misunderstanding in the mainstream media, but to have to complain about it to one of the largest ME charities is rather sickening and upsetting.

We ask for a formal apology and retraction of the column and for your next editorial column to be written by somebody else with experience of severe ME and explaining the science about why movement must be introduced very carefully and PEM avoided at all costs.

Kind regards,
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Dx Revision Watch said:
If you mean an editorial by Neil Riley, yes it's on this thread and another thread. My understanding is that this is 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.
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oh, duh, sorry to be so out of it. This mag i reading is autumn 24

MSEsperanza said:
It has the title "Animals need to move", right?
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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.
:heart:
Thanks everyone
 
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Kitty said:
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.
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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.
 
Robert 1973 said:
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.
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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.
 
rvallee said:
I think this is an older, from a few years ago?

But if I saw this at any time and was a member of an association that think it's a good idea to publish something like this, I would terminate it, ask for a refund and never look back. Incredibly condescending and foolish to even put this together. What a disaster those charities can be. We basically don't have any in Canada, and looking at how things are, the same, it's easy to see why having them exist makes no difference.
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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
 
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