United Kingdom: ME Association news

I'm hoping this will be the crisis point where there is a reckoning and a total rethink - but, holding my breath I am not.

 

I get the impression it's a closed process, so it's unlikely to be easy to find that out. Good idea, though.

 

I wondered if it was a way of taking any potential sting out debating the issue, especially as Charles, not without good reason, has a very strong personal following.

If I started a separate thread on this issue, would it be better to create a members only thread in the first instance?

 

AfME seems to be moving in the right direction - the recent meeting was reassuring - but I also do not forget the appointment I had with their clinical service a few years ago (in which ME was openly compared to FND - clearly there are still people at AfME who believe ME is a functional disorder or they would surely not have employed someone in a clinical role who also believed that).

I also just checked and the problematic resources, like the "pacing guide", are still on their website after all this time.

MEA, for all their faults, have never made these particular mis-steps.

Very much agree that Charles deserves an honour.

 

I’ve been a member of both for 30 years. AfME have made a lot more biopsychosocial mis-steps than the MEA during that time.

 

This and the last 4.5 years have really shown how much of the lack of progress comes from people who have recovered, fully or not. The professionals screwed us up, but there's at least as much nonsense and sabotage coming from people who think they mean well by making their own personal experience a default that anyone can achieve if they just did it right.

Because those who recover without making special attribution to their thoughts and behaviors, or supplement stacks or special diets or whatever, don't ever look back. They just return to their normal lives and forget all about it. But for some people, more prone to magical attributions, the same reason why alternative medicine is so popular, they become either militant about it, or see a good business opportunity. So about the only recovered people who are militant about it are those pushing pseudoscience and magical explanations extrapolated from their own. So in research there is enormous expectation bias and peer pressure (this works, if you find it doesn't work, do it again), but in patients there is enormous survivorship bias, all enabled by bad research that amplifies them.

Of course in a normal context dealing with normal professionals, they would be just as dismissive of those claims as if they were about people drinking goat urine or going on psychedelic retreats or homeopathy. But instead those confused people are exploited and elevated by professionals to promote their own beliefs and opinions. And they also do it all on their own, thinking they have some mastery of the universe that we failed to grasp.

Speaking of alternative medicine. The joke about how if it worked, it would just be called medicine pretty much no longer applies. Because so much of medicine now explicitly doesn't work, has been fully debunked, and is identical for the most part to other forms of alternative pseudoscience. So the joke has become a tragedy.

 

Charles is coming up 74 early next year (Neil Riley is late 70s). It is Charles' choice if he works those sort of hours. He does not have to - but evidently he chooses to do so. He could step down as a Trustee (after 21 years service) but remain a paid for or unpaid for medical adviser. That way he would not have the additional burden of board related work.

No one is forcing him to stay on the board.

 

They've hired a lot of extra staff over the last couple of years. In one of their annual financial reports not that many years ago they claimed they had only 6 full-time staff, or full-time equivalents. Can't quite remember now.

 

There are currently 6 trustees and one "associate trustee". (I think this is a trustee doing a probationary period, a role which the BoT introduced some years ago.)

Their current Mem & Arts permits:

The Make-up of the Board of Directors
21. The Board of directors of the company shall consist of:-

(a) not less than four, nor more than eight persons, elected by individual members; all such persons being current members of the company and whose subscriptions are up to date. No members of the company shall be elected unless they receive at least 25% of all the votes cast, and, for the avoidance of doubt, this requirement shall also apply in the case where there are fewer nominees for the office of director than there are vacancies on the Board of directors

(b) not more than three additional members co-opted at any time by the Board of directors​

So they could have up to 8 elected trustees plus 3 co-opted trustees = 11 trustees.



Back in 2004, their Mem & Arts had permitted:

28. The Make-up of the Board of Trustees

28.1 The first Board of Trustees consists of those people named in Statement of First Directors filed under Section 10 of the Act and sent to the Registrar of Companies when the Company is formed or appointed by them. They hold office until the first annual general meeting. After that, the Board of Trustees consists of:-

(a) not less than seven, no more than twelve persons, elected by individual and corporate members, No members shall be elected unless they receive 25% of all of the votes of those present and voting at the annual general meeting;

(b) not more than five additional members co-opted at any time by the Board of Trustees;​

So back then they could have had 12 trustees and up to 5 additional co-opted trustees.


The Mem & Arts at it stood in 2007:

28. The Make-up of the Board of Trustees.

(...)

(a) not less than four, nor more than eight persons, elected by individual and corporate members; all such persons being current members of the Charity and whose subscriptions are up to date*. No members shall be elected unless they receive 25% of all of the votes cast, and, for the avoidance of doubt, this requirement shall also apply in the case where there are fewer nominees than there are vacancies on the Board of Trustees

(b) not more than three additional members co-opted at any time by the Board of Trustees;​

*Previously, individuals who were not already members of the Association were permitted to nominate themselves or be nominated for standing in the trustee elections, with the expectation that they would apply for membership if they were elected to the Board of Trustees.

The Mem & Arts was changed after the 2005 EGM so that in order to have your name put forward for election, you first needed to have been admitted as a member of the Association.

This change to their governing document meant that any individual who was considered to be a potentially destabilising influence could be barred from membership of the Association. Being barred would prevent that individual from standing in trustee elections and would deny them a vote in AGMs and EGMs.

(This is what they did to me in 2004 and 2005. The then board: Shepherd, Riley, Flack et al, under Chair Christine Llewelyn, considered I was not fit to be admitted as a member of the Association and three times denied my application for membership using Clause 4 4.1 (b) of their governing document.)

The maximum number of trustees and co-opted trustees was also reduced.

This board does not have to operate with a relatively small board. They could have at least 5 additional trustees to share the workload.

I maintain that Charles (21 years a trustee), Neil (20 years a trustee) and Ewan (20 years a trustee) prefer to keep the board small. It means that currently, half of the current 6 trustees have held these positions for over 20 years.

 

I'd bet the farm there would be no merger with AfME while Charles Shepherd is involved with the MEA; the board had the opportunity to merge with AfME in the early years after the Hockey regime ended in 2003, when the charity had nearly run out of funds and staff were being laid off.

Don't think it would prudent, anyway. Who knows who AfME might take on as CEO in the future. Chris Clark (to 2006) and Sir Peter Spencer (2006-2012) didn't exactly distinguish themselves, did they?

Open Letter is now up to 765 and there may be some of the form signatures to add.

 

I am just dipping in to the forum while travelling. I am not up to signing a petition although the does not mean that Iw Ould not have done under other circumstances.

I have read the editorial by Neil Riley. All I can says that it comes across as shockingly ill-informed and ill-considered. He is entitled to believe things about his own illness but without any evidence base or medical training he is not, as an officer of a medical charity, entitled to impose his beliefs on members in this sort of way.

I am saddened to realise that the MEA carries people who are as inconsiderate as this. My view has nothing to do with my own opinions about ME/CFS, it is just that if any progress is to be made in basing a decent deal for people with ME/CFS it needs to be based on well-informed and carefully thought through understanding. This is just childish. People running charities need to be interested in the interests of their members, not their own.

 

Well said. Have you read his 2019 article too?

https://www.s4me.info/threads/me-association-magazine-summer-2019.10788/#post-191812

 

Official statement from Riley:

Quote:

I’d like to take this opportunity to respond formally to feedback expressed concerning my Editorial in the last ME Essential Magazine. First and foremost, I apologise wholeheartedly for any undue upset that the article caused. The piece was an opinion piece and was never written in a way to diminish or belittle the suffering we have all undergone in our lives.

Full statement:
https://meassociation.org.uk/2024/11/autumn-2024-editorial-statement-from-neil-riley-mea-chairman/

 

Thanks, @Kalliope - I wonder if it's worth editing your post to make it clear that that's just the opening para of his statement?

 

Do we know what #ThereforME were requesting in terms of action?

 

Facebook post link:

https://www.facebook.com/meassociat...1v7jHq2Vxi22EwWjoAW8xYdmAPSq6cCl?locale=en_GB

On the Facebook post:

"ME Association limited who can comment on this post."

Well, they would do that, wouldn't they.

On the MEA's website:

https://meassociation.org.uk/2024/11/autumn-2024-editorial-statement-from-neil-riley-mea-chairman/

Autumn 2024 Editorial: Statement from Neil Riley, MEA Chairman
November 19, 2024

I’d like to take this opportunity to respond formally to feedback expressed concerning my Editorial in the last ME Essential Magazine. First and foremost, I apologise wholeheartedly for any undue upset that the article caused. The piece was an opinion piece and was never written in a way to diminish or belittle the suffering we have all undergone in our lives.

I’m proud of the work undertaken by the MEA over the last 40 years and the work must continue. I’d like to take this opportunity to clarify some of the things I have said and reassure the community that as someone who has been severely affected by ME/CFS, that I do understand fully what life is like for us day in and day out.

I was not advocating any type of Graded Exercise Therapy: – Heaven forbid. That is the last thing I would do and goes against all my knowledge of the illness. I was concerned that my experience of illness before ME hit me was that, after the initial infection, I would steadily recover. But ME proved me wrong. I still felt terrible. Months and years went by. I still felt unwell. Finally, I thought, to hell with it, I must try and get out of bed even if some symptoms hit me. So, I did. The result was a life that was a bit better. Sure, I got knocked back and still do. Editorials are an expression of opinion and mine was based on my experience, but I fully understand that this is not reflective on many and in future I will not express my experience in this manner.

Allowing your body to rest: – I agree that this is a tough test for us all. 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. Nowhere have I advocated ‘not resting’. It is crucial that we do, otherwise we go beyond our energy envelope and relapse. If my phrasing gave the wrong impression, then I do wholeheartedly apologise.

That I was encouraging people to “push through” no matter what: – I did not and do not advise people to do that. I mentioned the risk in staying permanently in bed and the risk of ‘moving’.

“You are dismissive of the lived experience of people with ME”: -That is simply untrue. I have spoken to hundreds of sufferers and read thousands of accounts of the lives of people with ME. In addition, I live it every day and have for 38 years. I hate this illness. It robbed me, as it robs you, of a normal life. The lived experience of ME people is wide and huge. Some mildly affected, some moderate, some severe. If my phrasing gave the wrong impression, then I do wholeheartedly apologise.

The MEA has, for 40 years, been a staunch opponent of the psychological/psychiatric lobby. We know that this illness is physical and biological.

We do not give direct advice but share information and support individuals in making their own decisions about how to handle their condition through the many different methods available such as pacing. There’s no one size fits all treatment. We wish there was.

Currently, in addition to our funding of all of the basic running costs of the ME Biobank at LSHTM, we are funding just about every ME/CFS research group here in the UK and are also in the process of funding a large treatment trial.

Our vision is to improve the lives of those with ME/CFS and we do this by providing information, and support; funding and supporting biomedical research; providing education and training for professionals and all parties interested in the illness.

Of course ultimately we want to find the solution. In the meantime, all of us affected must come together, focussing our efforts and resources on achieving our goals.

Neil Riley,
Chairman of Trustees.
The ME Association.

 

I don't think that is good enough from a trustee of a medical charity. 'Opinion pieces' based on personal anecdote in an area plagued by such anecdotes and desperately needing some considered thought are unacceptable and it is time that was understood.