United Kingdom: ME Association governance issues

Kalliope said:
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/
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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.
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I think this is new?
 
Woefully inadequate statement. Doesn't tackle the fact that he openly mocked those he knew he would be offending with his 'opinion' - and what was probably most incendiary in what he wrote - reaching for their keyboards or some such wording.

He's the chair of the bl**dy charity, not some junior staff member who wrote something a bit off, or a patient with ME who wrote an opinion piece. He wrote a piece that he acknowledged from the outset would probably p*ss people off and funnily enough it did and he can shrug it off with some pithy justification.
 
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.

Neil Riley said:
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.
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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. 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 us 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.
 
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Kalliope said:
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/
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If I had a pound for every “opinion” I have to close my ears to, I’d be a millionaire. As David Bowie said “I am whatever the greatest number of people believe me to be”. It was “just an opinion piece” means something to press regulators, but not to pwME having this nonsense pushed down their throats every day in real life, and now also in the magazine of the charity who represents them (allegedly).
 
Eleanor said:
nope, you don't get to sneer about people being oversensitive if they disagree with you and then turn round and preach that "we must all come together".
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BPS do, look at Alistair Miller’s article.This is the same behaviour - invalidating to us, and straight out of the abuser’s playbook


“If my phrasing gave the wrong impression, then I wholeheartedly apologise”.

that’s not an apology, come on
 
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Trish said:
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.
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How do these people get into powerful positions in patient charties?
 
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. To me they seem distant, remote, and often have an unnervingly poor understanding of our condition. They are stuck in outmoded, decades-old styles of working and thinking. They fail to adequately challenge the NHS and its network of useless-to-actively-harmful clinics. They lack an understanding of the scope and scale of reform and change that is required. They all too often seem to regard patients as a problem to be managed. Some have embraced nonsense. Some are funding nonsense. They are all far too opaque.

They should accept that the history has resulted in a great deal of patient mistrust, and commit to a high level of transparency and accountability. They should never walk away from or close down debate.

I can only imagine what it would be like to be a new patient, to open up a magazine from an organisation that is meant to be representing you and acting on your behalf, only to be lectured and hectored in this supercilious and condescending way.

We endure enough slings and arrows from various members of the medical profession and the general public; the organisations that represent & advocate for us should be accepting, tolerant, generous, open, thoughtful and understanding.
 
I’m laying here rather baffled.

They/he cannot seriously have thought that was going to be good enough to put an end to it?

Anyone reading the response would surely have seen it was just going to pour more fuel on the fire?

They have clearly not taken any external crisis management advice, or, if they have, I’d not be paying the bill.

Then again, the article got published in the first place so this I guess just confirms an organisational lack of judgement.

Or, perhaps they have taken the view, let him keep digging..
 
Fainbrog said:
I’m laying here rather baffled.

They/he cannot seriously have thought that was going to be good enough to put an end to it?

Anyone reading the response would surely have seen it was just going to pour more fuel on the fire?

They have clearly not taken any external crisis management advice, or, if they have, I’d not be paying the bill.

Then again, the article got published in the first place so this I guess just confirms an organisational lack of judgement.

Or, perhaps they have taken the view, let him keep digging..
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Absolutely. I’m no comms/PR expert, but this is like something from over 30 years ago! Way to pour oil on a fire.

And the bigger issue is that now it appears the organisation is complicit. He may have just near demolished the MEA.

Compare and contrast Sonya Choudhry’s recent apology.

Neither charity should be making these missteps in 2024.
 
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