United Kingdom: ME Association news

That’s bad …


And chimes with the attitude issues we’ve seen elsewhere

 

Great you sent a letter.

Curious about their answer to this one.

 

Thanks.

I forgot I screenshotted this as well, so the 19th is certain.

Indeed 12 December archive capture: no Q&A
19 December archive capture: Q&A

The recent archive captures are indeed terrible. No idea why, but they keep reloading - nearly impossible to look at.

I found Friday that on my phone (Safari) I could open the archived page and let it run its course auto-reloading, it stops after a while. You can then also open the dropdown portions.
On my laptop the reloading continues, but it is possible at times to scroll down and click a link - not great for my eyes & brain though.

 

I got them to work okay by clicking the 'x' in the browser bar to stop it reloading. The Q&A links all seem to work too. Let me know if you want me to expand and screenshot any of them.

 

I have sent another email asking Neil/MEA for the third time for details of the meeting that adopted the current articles of association:

I also questioned the appalling assertion that the MEA need not hold AGMs:

Because I have not informed Neil of any intention to share his responses I will continue not to do so, but I will continue to summarise our communication here.

 

The attitude at the last AGM seemed to smack of this ‘be grateful for anything’ attitude based on them misunderstanding they needed to offer a real AGM

 

And ps why any human person wanting to do the right thing by the illness would have played those games re:the AGM even if it wasn’t a legal obligation doesn’t reflect as them being appropriate and responsible anyway.

the way they’ve behaved recently makes it clear that whilst all this is a mess (at best) it’s not something where we should or have any obligation to be sympathetic to them regarding it.

Their first instinct has not once been straight as a die nor plain polite. Which doesn’t look good for trusting there was ‘care’ at the time it happened or that there wasn’t fake playing as we saw with the AGM now happening back then either and then making this harder than it should be due to stuff that needn’t be happening

pure defensiveness or stress at the odd mistake doesn’t account for all the stench of choices made in the last year so somethings rum in how it’s being led and the attitude to constituents

now I’m watching the classic attack and then pretend to be all sad and expecting sympathy as ‘humans make mistakes’ on the next hand manipulation. I say that because those who do deserve such sympathy and understanding don’t act in the way we’ve witnessed in the lead up to it, so it’s just another tactic to me I’ve seen certain types run through.

it really isn’t ok to leave all the vulnerable people with such denigrating behaviour towards them being left unchallenged and given all this fir there not to be significant removal of power and voice from relevant individuals

I still can’t believe what he/they did with the very important motion that from what I can see was absolutely meeting any bar to be required to be voted in at a valid AGM asap

I’m also worried the timing being delayed is being used to keep the PROMS - which could have devastating effects for an entire generation as it’s ’how the illness is measured ‘ meaning it can be redefined on ground and minimised or changes distorted (by counting certain symptoms that respond to x but not others ) - from being tackled

 

Just compare it with Sonya Choudhury’s response to the 24 page “DIY care plan”. It’s not just that she withdrew it from the website, her manner and way of engaging with the community was so respectful, understanding and we felt heard and understood.
Contrast with “get up and move/ I’m in charge of complaints/filibuster AGM/slight mistake but anyone who says we did anything wrong faces action, also we were not wrong and we have set up a webpage today we weren’t wrong”

 

I'm beginning to think the MEA is a lost cause, as they show zero awareness of this contrast. You can't solve a problem until you realise it exists, and I've seen nothing to convince me they do.

I hope I'm wrong. When I say "they show zero awareness" I actually mean Neil Riley, because his is the only voice we hear. Maybe there are others working in the background who can see the problems, and it just needs time to work through.

 

Imo it's so bad because it further confirms an observed pattern and attitude.

In itself it's not great, but easily remedied in a healthy organization. There's a lot of stuff to keep track of, so the occasional error, if responded to in a good way, would not bother me.

 

I think this hits the nail on the head, it really feels like they just want everyone to be grateful, they know best and just shut up.

I'm sure many, if not most, of us (me included) are grateful for some of what they do; especially what Charles Shepherd has done (and continues to do), but this is not unconditional and they seem to be running their own fiefdom where they've never been questioned, as evidenced by the non-attendance at AGMs by members, their apparent shock and unpreparedness at members actually attending and they don't like it when they are on the receiving end of reasonable inquiry.

 

Thanks for the laugh this morning.

(I think it tickled my funny bone because of the ridiculousness of just changing the web page and then pointing at that web page saying: "The current Articles are available for everyone to see." See! We are not wrong!)

 

Agreed. I think I said very early on in this that it was a lost cause or similar.

However, there is still a large constituency of people with ME who don't follow the machinations of how the charity is run, aren't offended by some of the pap they share on social media, just see the Facebook posts that are gushing with adulation. Which I suspect is where the board are placing their faith, love bomb those who give unconditionally rather than those 'reaching for their keyboards' or however it was that Riley referred to them when he first lit the touch paper back in the summer.

I hope what is different with this storm (and perhaps what they haven't quite grasped) is that very well thought out letters are being sent to them, Companies House, The Charities Commission, which aren't going away.

This has spurred me, that if I can muster the energy, I will try to write to the CC because if enough letters land, questioning their stewardship of the charity, perhaps more thorough, probing, questions will be forthcoming from where it matters.

 

I suspect it's salvageable, and has the potential to be a good patient organization again. What I personally think it needs is a removal of the chair and any directors who stand behind the current way of working, and an internal attitude shift, where it is clear good governance is important and members are respected partners with a say and control function, not a nuisance to be shoved aside or threatened whenever they are critical of the organization's actions.

There is currently a group of members who are engaging in active membership - that's what got this whole ball re. the payments rolling in the first place- who want to make the ME Association function better and have its members engage with their org and actively use the governing tools they have. This is exactly what this organization needs imo.

To me Riley also seems clearly a lost cause - I think the man will never get it, he truly feels that he knows best even when wrong (as shown in other instances as well), and he seems more focused on protecting his position and projects than on getting it right.

I think the ME Association can be turned for the better, but it'll take removal of some people, active focus, and time.



Edited to remove some more personal info

 

@Trish, they should mourn your withdrawal since you gave them such good publicity in your widely-read review on Amazon of that popular Xmas book, signposting them to people needing accurate literature on M.E / CFS, back in the day when their literature was expurgated, but now it is ungoverned an ungovernable i.e unexpurgated it is misleading the highest echelons and the lowest and all of us jerks inbetween - with blatant intent I may add, but then today is the last day of a long year so please forgive me, I already lost count of the days for the first time this year and there is a global wake still going on

 

They have never welcomed scrutiny.

Some of us noted they were running the org as though it were their personal fiefdom as far back as 2004. They stopped publishing summaries of board meetings at the end of 2013, resulting in even less transparency. They wouldn't provide the Members' Register in 2004. They are not providing copies of Minutes, now, despite being repeatedly asked for them (and when they are legally required to provide them, if requested to do so). They block criticism on social media.

Their AGMs have always been poorly attended. The technology to hold virtual AGMs and EGMs/General Meetings was available long before the pandemic; they could have been early adopters of virtual or hybrid meetings. They've had an IT guy (now a full trustee and Deputy Chair since 2023) advising the MEA since 2002. He became an Associate Trustee in 2012. He could have helped the board make AGMs more accessible to a membership that finds travelling difficult but they did not pursue this until this year. Why not?

 

in for a penny, in for a pound then

That cited Q & A is a parody of:

"2024 AGM Minutes A.O.B [Draft to be approved by AGM 2025 and still being updated by patient participation engagement (PPE) as a work in progress],"

Spoiler: the parody

That cited Q & A is a parody of:

"2024 AGM Minutes A.O.B [Draft to be approved by AGM 2025 and still being updated by patient participation engagement (PPE) as a work in progress],"

It purports to minute the unlisted A.O.B (being mostly notified in advance to Trustees who simply could not abide it being put onto the Agenda as requested)

Normally Members might put their business onto the Agenda listed specifically and before the unlisted A.O.B. I had understood A.O.B is for matters unlisted as not notified in advance but arising by and in AGM

Please provide some draft(s) for a rewritten Agenda - rewritten to show how professionally it could and should have been written IF professionally done - without the conflicting interests, and so done neutrally and independently only to properly, duly and fully inform all Members in advance of the real business of the 2024 AGM,

- rather than twitter inanely instead and misuse the MEA business (operations and public relational publicity) BIDGET to concoct a fake paper trail
,

Spoiler: please provide the rewrite

Please provide some draft(s) for a rewritten Agenda - rewritten to show how professionally it could and should have been written IF professionally done - without the conflicting interests, and so done neutrally and independently only to properly, duly and fully inform all Members in advance of the real business of the 2024 AGM,

- rather than twitter inanely instead and misuse the MEA business (operations and public relational publicity) BIDGET to concoct a fake paper trail

Please list the matters for AGM (in a sentence for each discrete item) as notified in advance for inclusion in the Agenda (listing and timeplan obviously requiring more time than therefore planned).

Please add the time-plan to this draft Agenda estimating the time allowable for each item (to include the appropriate timing for the Trustees own Agenda items and for any unlisted A.O.B items)

Please provide a real summary of the real unlisted A.O.B items as arisen under the real A.O.B

Please provide a listing for the real matters as raised under A.O.B as not notified in advance for inclusion in the Agenda listing

Plesae provide the real draft minutes of the real A.O.B

I ask because the Q & A mocked up by the Trusatees consists largely of the reports made orally at specious length, by the Trustees, to their captive collapsing audience, in lieu of providing their reports in writing in advance as is normal and as was requested for a humane reasonable adjustment of abnormality back to normal

This cited Q & A is exactly what it looks like (to me): WINDOW DRESSING showcased in a showcase making the website a tool for the window dresser, a dressing so anomalous in this arena that it was plainly crafted for use in a completely different arena to a private audience in need of just such hearsay "evidence" as can rewrite the real evidence, for only as long as the real evidence need not be examined eg in grant applications for part-funded costly research to apply a ... patent toolkit ... epidemiologically .... with full trust in the Trustees

A prime example being the equally anomalous letter alleging anomalies in NG206 which letter went a long way in Australasia (by hearsay), until the NG206 and all its reasoning may be examined - likewise the Q & A answer minutes of meeting

The intended readers are not just the Charity Commission and the Companies House already misdirected to read the Q & A as a benevolent vexed long-suffering defence in the otherwise unavailable complaints procedure.

Every lawyer in the land knows the requirement to show and conduct a company complaints process on legal matters. The flippancy on missing procedure is breathtaking coming from the company's own in-house Legal Advisor plainly got cocky while so long under some protection elevated above and beyond the law and empowered by

Spoiler: the invincibles, from one keyboard warrior to another, the movie is over

an invincible team on Mission Impossible featuring TheThunderbirds and ScoobyDoodoo, don't be a tosser, pick it up and bin it, its a bad habit and the contagion makes little kiddies go blind

 

Neil replied again, but in relation to my third request for details of the meeting that adopted the current articles and to see a copy of the minutes of that meeting I was told:

I don’t think that is true, I understand as am member I should have access to minutes of general meetings. However for the time being I have just replied:

Unfortunately in error I said ‘Society’ rather than ‘Association’.

 

@Peter Trewhitt but don't we know that in these proceedings (of those meetings that changed some articles-of-association) the MEA Trustees and their MEA Advisors gave reasons to the Members who made these changes.

Reasons so effective and so so unspeakable that such reasoned reasonable Trustee reasoning could not and cannot and will not be spoken of, nor corresponded upon nor discussed on social media not even once in 64 pages - let alone Recorded - ever again

And no Trustee, no Medical Advisor, no Legal & Posterity Advizar, no Trip Advisor and no I.T Advisor could possibly recall the reasons given anyway, plus as 64 pages appear to demo its a very effective tabu constructed it would seem by red herrings like slaps in the face by a cold smarmy git fish with all the insouciance of long practice

Thats exactly how significant it all was so "go away and stop bothering these nice people"