United Kingdom: ME Association governance issues

My alternative theory; they all hate him and have allowed him the platform to get this response to get rid of him. That would make more sense than the rest of what has happened.

From the current Mem & Arts:

Removal of a director by a General Meeting

25.
(a) A general meeting of the company may remove any director before the end of his or her period of office whatever the rest of these articles or any agreement between the company and the director may say.

(b) Removal can take place only by the company passing an ordinary resolution saying so. At least 28 days' notice must be given to the company and at least 21 days' notice to the membership. Once the company receives such notice it must immediately send a copy to the director concerned. He or she has a right to be heard at the general meeting. He or she also has the right to make a written statement of reasonable length. If the statement is received in time it must be circulated with the notice of the meeting. If it is not sent out, the member may require it to be read to the meeting.

Removal of a director by the Board of directors

26.
(a) If a director fails to attend three consecutive meetings of the Board of directors, the Board of directors may resolve if they see fit that he or she be removed from the Board of directors for good and sufficient reason. The director must be given at least 21 days' notice in writing of the resolution and that person has a right to be heard before a vote is taken.

(b) If two of the Board of directors propose a vote of no confidence in another director, he or she can be removed provided a simple majority of the Board agrees.

Termination of director’s appointment

27. A person ceases to be a director as soon as—
(a) that person ceases to be a director by virtue of any provision of the Companies Act 2006 or by the Charities Act 2006 or is prohibited from being a director by law;
(b) a bankruptcy order is made against that person;
(c) a composition is made with that person’s creditors generally in satisfaction of that person’s debts;
(d) a registered medical practitioner who is treating that person gives a written opinion to the company stating that that person has become physically or mentally incapable of acting as a director and may remain so for more than three months;
(e) by reason of that person’s mental health, a court makes an order which wholly or partly prevents that person from personally exercising any powers or rights which that person would otherwise have;
(f) notification is received by the company from the director that the director is resigning from office, and such resignation has taken effect in accordance with its terms;
(g) he or she is removed from office;
(h) he or she brings the company into disrepute
(i) he or she is directly or indirectly involved in any contract with the company and fails to declare the nature of his or her interest to the company at the first meeting at which the contract is discussed or the first meeting after the director became interested in the contract​


Unclear whether "direct the directors to take. . .specified action" would cover removal from office.

Members’ reserve power
7.
7.1. The members may, by special resolution, direct the directors to take, or refrain from taking, specified action.​
 
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Does anyone know if Charles Shepherd has been nominated for any UK honours in the past? Apparently the Cabinet Office don’t like too frequent nominations for the same person, but I wonder if nominating him for an honour now might be a useful accompaniment to pressure on the MEA to reform its governance.

Although I am not a current member so am reticent to advocate for specific radical changes to the MEA, I do feel that the wider ME community, both individuals and organisations, can justifiably recommend him for an honour in the light of his wider ‘services to ME’. If anyone thinks this a topic worth discussing here I would be happy to start a new thread.


Not right now. That would distract from the deeply serious issue of MEA unaccountability and it's refusal to reign in it's loose cannon Chair.

Notice no Comment from Charles Shepherd about Riley's disgraceful opinion pieces or his equally disgraceful pseudo apology.

That indicates tacit support for Neil Riley and his actions from Charles Shepherd.

The only response from the MEA has been to silence the ME community by closing the Comments on twitter and FB.

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He’s about to get put in his place, I hope.


By who? Who exactly is going to put Neil Riley in his place? Not the MEA, who just published Riley's insulting pseudo apology in which he doubled down on his original grotesque statements in his 'opinion piece' in which he disparaged, insulted and misinformed ME sufferers/the ME Community in total.

The Chair of the MEA doesn't get to write opinion pieces disparaging and mocking the patients and presuming to dispense damaging 'advice' based on his memory of his privileged experience of decades ago.

Full Stop.

And the MEA then closes the Comments to Riley's disgraceful pseudo apology!

This is by no means the first time the MEA has allowed it's charity officers to taunt the ME community. It's been going on for years/decades on it's Facebook page.

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So he sets up the straw man argument that he wasn't advocating GET, as far as I know no one has accused him of doing so.

On the Sheffield Group’s Facebook posting on this topic I did use the phrase ‘GET-lite’ so I imagine others will have drawn the parallel too. Though Neil Riley is not advocating increasing activity in fixed increments as a treatment as envisaged by such as PACE, he is implying that activity and pushing through any resistance can lead to improvement in quality of life.

I understand that Riley had played a genuine role in defending our community against the harms of PACE, there is a parallel in his editorial to the ideas that a positive attitude and doing more may lead to some improvement. So I don’t think the phrase GET-lite is totally out of line.
 
So Riley gets to make a statement on the MEA website that isn't a real apology, it's a string of excuses and self justifcation.



So he sets up the straw man argument that he wasn't advocating GET, as far as I know no one has accused him of doing so. Then he goes on to compound the problem by repeating his story that it was deciding to get up that led to improvement. This was the part that was most damaging in his article - the idea that the rest of would improve if only we followed his example and got out of bed.

How tin eared can you get?

This is one of those non-apologies that says I'm sorry you are upset but I did nothing wrong.

Given that he told the same story with the same implied criticism of others for not being brave like him and getting out of bed 5 years ago, and it met with the same criticisms, I am flummoxed.

I've currently decided not to read it and give him my ear time, but leaving myself the option if I wish to at a later point - thanks to those who made that sacrifice in doing so in order to confirm the thrust.

As I haven't read it this is of course just me saying something unsubstantiated but it struck me, particularly once I realised half of it came from his 2019 article and read the thread on it where he actually commented [on here as part of that thread at the time] so was aware of the offence/issues and replied in a certain way, that he might well have written this statement 'in anticipation' ie wrote it alongside the article.
 
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How do these people get into powerful positions in patient charties?

This is a very important question in the general as well as the specific - to the extent that I think it one day should be a thread in itself. I suspect there are some common things that we all need to discuss.

I remember, for example, reading the (very long) detail in the article on the link in the first post on the following thread, and finding some things that felt familiar to other things (not all ME) to different extents : BPSWatch website: "Querying what goes on at the British Psychological Society" | Science for ME
 
Maybe he has seen the writing on the wall and has taken the opportunity to put everyone in the community in our place while he still has the platform.

I think that it is this too potentially. Taking control of the narrative.

Or if you are going to go for other reasons - it is probably important for a strong list to be composed anyway to get the wording correct - then creating a straw man to pretend it was just 'everyone doesn't like your beliefs' or 'cos they were all over-sensitive' (which will go down well with bps-minded types, those who don't read things properly, many of those outside the ME sector potentially)
 
On the Sheffield Group’s Facebook posting on this topic I did use the phrase ‘GET-lite’ so I imagine others will have drawn the parallel too. Though Neil Riley is not advocating increasing activity in fixed increments as a treatment as envisaged by such as PACE, he is implying that activity and pushing through any resistance can lead to improvement in quality of life.

I understand that Riley had played a genuine role in defending our community against the harms of PACE, there is a parallel in his editorial to the ideas that a positive attitude and doing more may lead to some improvement. So I don’t think the phrase GET-lite is totally out of line.

It is hard to believe that the person who wrote the following many years ago in 2014: MEA chairman Neil Riley unpicks a central thread in the PACE Trial | 26 February 2014 - The ME Association

Is the same individual who would choose the title 'Animals must move' - and I mean that in tone as much as anything. I don't know however as I just remember what must have been the 2019 article and thinking 'pah' about him (won't go into detail now) whether there is a story over that time or if it's just who he was working with/what was the issue at hand at different points on different things showing more or less of certain things.
 
A reminder that Riley has a track record of being offensive, condescending and trying to silence views that are not his own. And of showing bloated yet completely misplaced confidence in his own views and vapid pontifications. Valerie Eliot Smith had to file a complaint because of his behaviour:


Link

The complaint was dismissed by the ME Association. And they kept him on, despite his behaviour. They also accepted Sarah Tyson's behaviour.* (Note that she too referred to ME patients as "sensitive"- this is a classic tactic of abusers to justify dismissing their target's criticism of their behaviour for themselves and to encourage it in others.)

At the time I didn't think this guy should be near ME advocacy (or any patient advocacy for that matter):



That opinion still stands.

Given that Riley has been a shaper of the organization for so long (he has been involved and his behaviour accepted for at least 20 years) and what the organization allows, I have little trust in it.


*I coudn't find the response to the letters that were sent to the ME Association re. Tysons behaviour, but IIRC then her behaviour was not properly addressed nor she held accountable.

I think it is important to remind of the other issues and problems. And as Jonathan mentioned the issues with certain projects not being well-managed/chosen and replies there etc.
 
Neil Riley manages to add another ME/CFS myth into his non-apology:
Most of us with ME were achievers, driven people who want to do stuff and to try and stop ‘doing’ needs a lot of will power and patience.

There's the suggestion that people with ME/CFS are the Type A's, "driven people", with the implicit suggestion that it is our personalities that have contributed to us being sick.

(As well as creating an unnecessary distinction between "achievers" and "non-achievers" and "people who want to do stuff" and (presumably) "people who don't want to do stuff", when of course everyone achieves something and wants to do stuff.)
 
(As well as creating an unnecessary distinction between "achievers" and "non-achievers" and "people who want to do stuff" and (presumably) "people who don't want to do stuff", when of course everyone achieves something and wants to do stuff.)

I haven't cringed so much since I heard elderly family members trying to get the language right when talking about a person of colour, without the faintest inkling that their racial background was completely irrelevant to the anecdote anyway.
 
Most of us with ME were achievers, driven people who want to do stuff

Citation required. This is just one of the BPS tropes trying to find something, anything, that they can hang a psychopathology label on.

and to try and stop ‘doing’ needs a lot of will power and patience.

I agree with this (in general, not in the context of 'achievers').

If he can understand that surely he can understand what is wrong with his original editorial?
This is one of those non-apologies that says I'm sorry you are upset but I did nothing wrong.
Exactly.
So, a typical non-apology apology. Comments are disabled because of course they are.

They don't seem to understand that there is deep and widespread discontent with how pwME are represented by the charities & organisations that are meant to be working on all our behalf.
If they had set out to offend patients, and discredit themselves, this is a good way to do it.
Compare and contrast Sonya Choudhry’s recent apology.
Yeah, that thought crossed my mind too.
My alternative theory; they all hate him and have allowed him the platform to get this response to get rid of him. That would make more sense than the rest of what has happened.
Plausible.
 
By who? Who exactly is going to put Neil Riley in his place? Not the MEA, who just published Riley's insulting pseudo apology in which he doubled down on his original grotesque statements in his 'opinion piece' in which he disparaged, insulted and misinformed ME sufferers/the ME Community in total.

The Chair of the MEA doesn't get to write opinion pieces disparaging and mocking the patients and presuming to dispense damaging 'advice' based on his memory of his privileged experience of decades ago.

Full Stop.

And the MEA then closes the Comments to Riley's disgraceful pseudo apology!

This is by no means the first time the MEA has allowed it's charity officers to taunt the ME community. It's been going on for years/decades on it's Facebook page.

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It’s a self-cancellation. They have lost the support of the people they claim to represent.
 
His 2019 offering was bad enough...

image_2024-11-18_102522879.png
sorry because I was trying to not get myself sucked into this but...

the first section you've put a border around, particularly the last para. Well it just shows the differences in people's lives to his.

"if I'm back in bed by 10am no matter" [I got washed and dressed for the day at least]

It does matter hugely if you live alone and are the only one who can feed and toilet yourself and all of the other chores that mount up over a week and you waste all of your energy for the day washing and dressing to be back in bed by 10am instead. He does realise there are many who are caring for children or others?

I didn't read a word in either this or the 2019 article about how to do the washing (though I assume he had something clean to 'dress' in) or juggle booking medical appointments and getting hold of prescriptions and the related admin/calls or anything to do with the conveyor belt up to feeding himself, and then there is anything to do with 'cleaning' most struggle with help with but can't fit into their envelop from that cup being washed to sheets on their bed and of course the rest.

Others have used the word privilege but in the context of today it feels bigger than that. Either someone is well enough for all these gaps that would have to trump or be managed around as priorities 'getting dressed and washed for the day' or he needed, given his position to explain this different world and what is bridging the gap that his constituency is unlikely to either have or be struggling for help with (but dealing with the issue of such help being aware of other limitations like chat and sensitivities such as noise).

Don't get me started on how few people get the lying on the bed twice a day without something like building work, that has also exerted them before and after that, shaking through them.

It's nice for him that he has a recuperation hospital within a home , so why is that not what he is making his 'mission' [for all others to have access to] and title of his piece?
 
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"if I'm back in bed by 10am no matter" [I got washed and dressed for the day at least]

It does matter hugely if you live alone and are the only one who can feed and toilet yourself and all of the other chores that mount up over a week and you waste all of your energy for the day washing and dressing to be back in bed by 10am instead. He does realise there are many who are caring for children or others?
That's such a good point bobbler. Presumably Neil Riley has someone on hand to make sure that he and the rest of his family have a meal to eat in the evening, regardless of whether he has used up all his energy on his daily shower.
 
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