United Kingdom: ME Association news

Has the ME Association just become a glossy magazine subscription to help people with ME pass the time and ‘feel’ supported?

Like “Caravan Owners Weekly” or something?

What would it take for a significant part of their 5,000 members, and where are these members anyway? None on here (prepared to admit it ) so it would seem.

 

Just to get my head around it

it’s only 5000 actual members x say £20/yr? Which is £100k

but of course their role is more than that as some donations - which I’d guess is a bigger income line - might be from members or for them (either close family/friends or just ‘the idea of members’) . So fir this the members are pretty key

but then there might be donations based on just brand and assumptions from pwme and those who don’t have me/cfs

I’m trying to think if it needs to be limited to members to flag issues .. really . And I’m trying to understand if indeed the membership is sold at all as having a stake/vote or indeed people see it as you’ve said more like buying a subscription for services

I think there is some muddiness

because if people were buying a subscription the ‘customer input’ would be there because eg a commercial company would be worried about people stopping buying the magazine

but if people are buying something else ie are they ‘keeping it going because of the pr to others’ or support that used to be offered ir because they think they could shape it as an org then where is that mechanism given most would need to do it as it happens by email and not a travel to an AGM in person

how does this org actually work these days/what is its model re the member thing?

 

I think the MEA has had substantial income from Legacies recently.

 

An information and support charity should give only relevant accurate information, and it should be supportive.

 

Seeing a post like this from CS makes me think they are just going to try to ride this Riley article out, business as usual..preach to the converted about all the work they do.

 

@Fainbrog yes it’s ’look at the dangly keys’ to the pwme and trying to go round us with anyone else who hasn’t spotted it by disappearing it to make it old news feel.

I’m not liking this close down social media comments to a silenced population and at the same time don’t acknowledge- it’s appalling , there should at least be news updates on process for them to even seem to be above board. But yes its like they are hoping it will be forgotten or not noticed if they stop anyone from flagging it other than Neil getting his voice twice over - which says a lot about them given how many people the article was sent to.

I can’t believe the AGM would require in-person travel either.

He (and if there was a co author) just took his 2019 article and deleted out the context before of him having had 7years in bed - whatever that equated to - before all of his suggestion

that’s so pertinent because these days whatever severity the majority of pwme do not get left in peace to do this without noise or financial pressures or misguided intervention from health or state threatening them because of beliefs it was deconditioning

the timing he did this could not be worse because anyone in the last maybe even twenty years would have not had that situation and yet he doesn’t contextualise. That his seven years and the start of all this was before that ‘generation of get’ so is unrepresentative of what anyone in recent times would have had as a chance for rest before trying anything.

how can someone then sneakily chop that huge difference out of the story and suggest to those who’ve had something very different that his bit after he’d had seven years should be the same. It’s not even that people would need to misread it, it’s written like that

so it’s not even his whole story - why did he choose that bit and to cut the others than to fit or create a narrative?

so this and the title and tone and the fact it was intended to push an idea makes it far worse than his 2019 ‘this is my story’

I’m too worn down and broken to say what he has caused as chains of events but it’s massive and could be catastrophic in the difference it makes for some individuals as it could directly influence their limited support network at a point where they are unlike him needing that rest, might well already be beyond or over their limits in committments vs capacity, and yet potentially doing more already than he is due to having less fortunate situations, and if he can’t be responsible himself the organisation needs to be otherwise the last 7years of their work campaigning has been pointless

it feels like that now as we have bps old school staff just being allowed to brush off change and it’s almost more intimidating and hurtful plus their campaign of pushing rumour to try and undermine the guideline change (only because of 'patient lobbying' rather than the truth of the Nice process showing it is unevidenced just finding a new way to lie that we are some sort of 'mob') have all been directed at patients and telling lies about them

which NR has deliberately chosen to stoke in each part of this before anyone even spoke. And from him and his position in particular how dare he. His primary role is to be interested in the situation of those the charity is claiming to be in the name of, so of course if they have a right to speak in response to anything it is this.

It’s just taunting and feels like misogyny I’m afraid will all the antagonistic ‘over-sensitive’ themed barbs. To start a piece with that as he did says it all to me. Him doing this gives permission for all others to kid themselves that’s ok when someone is hurt by an unkind comment or lack of understanding. Has he not lived in the world most have where that’s every day and needs a campaign in itself because it’s a massive unkind load no one should have to weather.

he shouldn’t be in a position of responsibility like this - he deliberately stepped beyond anything in his remit in order to entitle himself to do this. It was strange to do even it had been of any worth.

And it’s in line with a past attitude that has backed up similar inappropriate language/accusations behaviour from others eg Sarah Tyson's comment as ok by not censuring it and deeming that as serious as it was. So it’s a pattern and not a mistake

I think they need to start unhitching their wagon from him

Not trying to pretend everything else will be lost if you don’t rein in the person who has done these things.

It’s now the other way around to what they might be assuming (the good will outweigh the issue) and they need to realise that doing nothing puts those potentially good things in jeopardy as this can’t be ignored as that pattern and level has reached a critical mass affecting trust, reputation and much more not just from pwme but other organisations they assume would still associate with them

and if the trustee position as it is will be better if more easily filled by splitting it, or other ways to make it something manageable for the right people to be out there able to sign up for then do so. There will be plenty who would be able to help with that redrafting of the role potentially as consultant or advisor? So that’s a poor reason for doing nothing, even if the 'what next' does need to also be sensible and considered.

 

Well said @bobbler !

 

The MEA aCT AS if THE past 20 - 30 years of awful NHS management, pushing people on a downward spiral didn’t happen & an issue for those with this history. MEA made a leaflet on prognosis earlier in year & I pointed out there was 0 mention of GET or harm in the entire document, which I’m sure the state / NHS loves.

 

Charities are permitted to hold virtual and hybrid AGMs.

Historically, the MEA has held in person AGMs which understandably have had low attendance from the membership. Members and non members can speak at AGMs and members can vote in trustees elections, motions etc.

Votes cast in person at the AGM meeting are added to the postal vote. Postal vote slips have to be returned at least 7 clear days before the date of the AGM, which means that decisions on whether to vote for or against any nominees or on motions have to be made before the meeting has taken place.


Last week, I raised several question on Twitter/X about the arrangements for this forthcoming AGM, including whether this year's meeting was planned to be accessible, in real-time, via Zoom or a similar platform.

Those questions have been ignored.

Questions about the AGM have also been raised in a comment on MEA's Facebook page. My understanding is that this comment has been hidden by MEA Facebook moderators.

The MEA has posted nothing at all on Facebook, Twitter/X or its website about the arrangements for this AGM and whether the meeting is still going ahead on 9 December.

They have missed the "21 clear days' notice" required by their Articles of Association and even if the magazine were to arrive today, that would leave only 13 clear days. Any postal vote slips would need to be returned at least 7 clear days before the 9th December and would need to be received by the MEA by 30th or at a push, Monday 2 December.

If it isn't being postponed, people have been left with very little time in which to sort out travel, escorts etc. But the MEA continues to post sweet FA.

To the best of my knowledge, in the past, the MEA has not used Zoom or a similar platform to facilitate easier participation in its AGMs and it remains unclear whether Zoom will be available this year.

We will see what this week brings.

The Articles of Association allow for up to 15 months between AGMs, so if this meeting is postponed for whatever reason, the board has until March to hold its annual meeting.

I'm not a member but I am appalled at how the MEA is handling this and its contempt for its membership.

 

Thanks for keeping the focus on this, it’s a really important aspect of what is happening right now.

Sadly though, not surprised by the radio silence on this as everything else contentious right now.

Wonder, if you have the energy, whether a direct email to them would be helpful, such that they can’t say they ‘missed’ your posts on social media?

Of course, the other option is let them keep on digging the hole they are in by not following their processes and have more of a case to go to the charities commission over.

 

Not necessarily.

The office of chairman is transferrable, as are all the offices. The office of chairman can be removed from a director and handed to another director (or to the Deputy Chair - David Allen). Appointment of officers does not involve the membership.

The board can remove a director from the board entirely via clause 26 (b) without involving the membership.

The board can run on a minimum of 4 trustees. If Riley stands down, or is stood down by the board, that would still leave 5 full trustees plus an Associate Trustee.

The board can appoint anyone to fill a vacancy in between AGMs. (They are allowed to co-opt up to 3 additional board members who can serve on the board for a period of time without having to go through the election process.)

So Riley's voluntary standing down, or two board members proposing a vote of no confidence and a simple majority from the board to remove him from office could all be done outwith an AGM, as the company would still have sufficient directors to operate legally (even without taking on co-optees).

 

I'm going to let them keep digging.

If the magazine is delivered today and the AGM is still going ahead but nothing is said publicly by the MEA about their failure to meet the 21 day notice clause, I will post more about this on Twitter/X.

They know they have failed to keep the membership properly informed. They know that whoever was moderating their FB over the weekend hid a comment asking questions about the AGM (and CS appeared to be posting new material all weekend and was happily responding to comments about soft topics).

As for the Charity Commission. They will be informed but in my experience, they have taken little action over the years in response to complaints.

 

Nothing on Twitter/X this morning and nothing that I can see posted on MEA Facebook, either.

I still think they will most likely cancel (blaming the printers or staff sickness) and rearrange the AGM for early next year by which time, there will have been a board reshuffle and hopefully a retirement/removal.

 

I have just looked through the MEA Facebook page for the last couple of weeks and it all feels very surreal when contrasted with discussion elsewhere.

It is not helped by their Christmas hamper project where people are asked to nominate others as ME heroes (not sure how the MEA phrase it). This means their page is flooded with feel good stories. After the contentious editorial was first being discussed elsewhere I noticed a few indirect though obviously pointed comments on other posts presumably intended to make the posters concerns’ clear without the comments being deleted. I could not find these comments again, though I did not search that hard, and there don’t seem to be any more recent similar comments. [see post immediately following this for a link to comments on the MEA page discussing the editorial]

More recently the only comments relating to the MEA I found were positive, including some emphatic praise for Dr Shepherd.

I have no idea whether the MEA’s apparent avoidance of any discussion about this is to suppress the story while they decide what action to take or to just suppress any discussion in the hope that the story just goes away.

That an AGM on the planned date is now looking unconstitutional, if this is by choice rather than by accident, suggests that the Association intend to deal with this matter within the central core of the organisation without any involvement from the wider membership. Fixed terms for office holders in an organisation are very important to avoid what seems to be happening now where those officers confuse their personal views and interests with what is in the best interests of the organisation.

[edited to add correction]

 

There were a number of comments about the Riley "editorial" under this unrelated post - I can still see them when selected to display "All comments":

https://www.facebook.com/meassociat...reQcbq4DBhUScZx3HNDEYFpU6j6ENhy19ATCGyGrRsGcl

ME Association
MEA guide to activity and energy management and pacing

 

Thank you @Dx Revision Watch, you are much more thorough than I was.

 

Yes I’m sure it’s coincidence due to this initiative being this time of year but the nominate a carer thing being the main posts almost feels like a pr strategy.

no one is going to write an unrelated complaint on a post about someone else’s partner or family member

and yet it seems like they can’t start threads themselves on the fb ? Is this now the case where people used to be able to submit their own question or comment directly onto the wall?

so as mentioned some tried to write some feedback to flag this was an issue on the pacing leaflet thread but there is a sense that opportunity for open comment (even within reason would be understood - and more so if the note about it was genuine from someone else that the issues were being discussed seriously and all direct feedback would be welcomed and read by someone else) is no longer there

making for a feel of one way communication unless it’s praise - which for pwme is all to familiar as censoring and editing our views and what we are allowed to feed back and still this coercion impacts the treatment we receive today , so MEA need to be leading by example to clinics that would do this with not having independent proper open feedback on whether treatment helped or harmed for example without people feeling they would be boxed in by forms or worried about repercussions if people didn’t take kindly to feedback

but this all just feels like such a kick in the teeth because it’s not as if we haven’t had enough vitriol barely hidden ‘ungrateful so and sos’ paternalistic attitude in the past. That left so many having to be so brave to try and get treatment that caused them harm feedback or just the impact of it even heard and it’s still not acknowledged by so many even though they wear the consequences every day potentially for the rest of their lives. Whilst we watch other scandals where people are at least getting to speak and be heard it feels like we are getting told to go back into the closet because stopping harm by honest feedback is ‘impolite’ to boot.

I’m also conscious that the clinics project had a news item recently and is focusing on the area local to the MEA offices as the first area ‘up’ for sorting.

which means those nearest geographically to a physical meeting if it is based near there would have the most to lose regarding relationships if their vote wasn’t taken in the right spirit.

 

Yeah it’s weird the MEA in the socials is all “happy Xmas, nominate a hero” and smiling Xmas scenes. Meanwhile behind the scenes is very murky. AGM arrangements absent; paternalistic op-Ed’s and PROMS.

When you have been talked “at” for as long as we have, the last thing we needed was to be told off like naughty children - and I mean that in the olden days sense. The “here’s a telling off for something, I don’t care if you did what you’re being accused off but I’m letting loose on you all the same and you have to take it”. The kind of thing we have laws and rules against these days.

Who among us has tried to do 100% bed rest (when we were able to get out of bed and “do” things like oh, tidy up, grab a drink, answer the door?) We all struggle to pace aka build in enough rest. Read the room, Neil.

And thanks for the little bit at the end about “oh not severe ME, you obviously can’t get out of bed” I’m sure after the energy of reading that they’re glad to know it was (yet another) article which excludes them!