United Kingdom: ME Association governance issues

https://bsky.app/profile/mayalindemannrn.bsky.social/post/3lbteqexpfs2n
Post on Bluesky:
@meassociation.bsky.social
epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood” MEA can’t help but show contempt for the ME community.
The post includes a screenshot of a reply from the MEA which says:
Please understand that there is much discussion within the MEA at the moment. There has been a lot of correspondence to review and respond to - these are a mixed bag, some being concerned about wording, some concerned about Neil, some unhappy with the editorial, many messages are actually very supportive and there are some, like yourself, who are angry about the editorial.
I cannot promise any specific outcome to any person who has written to the MEA. A full discussion must take place before anything changes or anything is decided. The MEA cannot listen only to the few who are baying for blood, or only to the many who welcomed Neil's editorial. A balanced view with all things considered must be taken.
All I can do is assure you that this is taking place.
Best wishes,
Caroline.
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Replies on Bluesky are assuming Caroline is the magazine's editor Caroline Cavey.

So the MEA gets it badly wrong again, insulting people with serious concerns as 'baying for blood'.

Unbelievable.
 
Trish said:
So the MEA gets it badly wrong again, insulting people with serious concerns as 'baying for blood'.

Unbelievable.
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I agree, this is awful. This idea of needing 'balance' reminds me of the false balance we had for years of having climate-change deniers up against climate scientists every time that climate change was discussed on the news. The MEA seems to be seeking to balance a BPS view with a biomedical one.
 
Trish said:
https://bsky.app/profile/mayalindemannrn.bsky.social/post/3lbteqexpfs2n
Post on Bluesky:
@meassociation.bsky.social
epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood” MEA can’t help but show contempt for the ME community.
The post includes a screenshot of a reply from the MEA which says:

Replies on Bluesky are assuming Caroline is the magazine's editor Caroline Cavey.

So the MEA gets it badly wrong again, insulting people with serious concerns as 'baying for blood'.

Unbelievable.
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Un-bloody-believable. They are going to try to ride this out, despite over 1000 people adding their names to a very measured letter.
 
Trish said:
https://bsky.app/profile/mayalindemannrn.bsky.social/post/3lbteqexpfs2n
Post on Bluesky:
@meassociation.bsky.social
epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood” MEA can’t help but show contempt for the ME community.
The post includes a screenshot of a reply from the MEA which says:

Replies on Bluesky are assuming Caroline is the magazine's editor Caroline Cavey.

So the MEA gets it badly wrong again, insulting people with serious concerns as 'baying for blood'.

Unbelievable.
Click to expand...

If this reply is by the Magazine’s editor it repeats the Chair’s failure to understand what is going wrong, reinforcing the concern that the issues with the MEA are systemic.

It hints at a potential contempt for people with ME echoing their failure to address our concerns about Sarah Tyson’s comments here.

[edited to add final sentence]
 
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This could reflect a problem of a small number of people in control for a long period, when it becomes ‘THEIR’ organisation and any criticism is seen either as a personal attack or reflecting the critics’ personal failings.

Undoubtedly the MEA has done a tremendous amount of good and a relatively few people within the organisation have historically done an immense amount hard work. However that alone is not sufficient when to the general public the MEA is seen as the voice the ME community in the UK.
 
Trish said:
https://bsky.app/profile/mayalindemannrn.bsky.social/post/3lbteqexpfs2n
Post on Bluesky:
@meassociation.bsky.social
epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood” MEA can’t help but show contempt for the ME community.
The post includes a screenshot of a reply from the MEA which says:

Replies on Bluesky are assuming Caroline is the magazine's editor Caroline Cavey.

So the MEA gets it badly wrong again, insulting people with serious concerns as 'baying for blood'.

Unbelievable.
Click to expand...
WOW.
 
Yeah
WOW
I know I’m just a person, but I’m a person who used to have a corporate job. I just cannot fathom the emotive/personal feelings output with the MEA (and Tyson) organisations and their reps just don’t behave like that in my world! This language about people being “silly, nonsense, baying for blood” it’s wrong, it’s outdated, it’s unhelpful and unprofessional. That it comes from a charity to its so-called target demographic - sick people who have been maligned is crazy! This is the sort of naive reply I expect from the boss of small local business to a bad/unfair trip advisor review.
 
That's an absolutely extraordinary 1989 letter from Riley.

For those who haven't read it yet, he was claiming that within days of arriving in the warm sun and new surroundings of Australia his illness of 2.5 years was cured, and was offering his example, his "miracle" as inspiration to others. He talks of a psychological overlay, the mind directing the body to stay ill after the illness has passed. A quarter of a century later, he's still ill and still holding himself up as inspiration to the rest of us.

"It is a vicious circle that needs beating" he says. Indeed.

And the last paragraph:
"But what concerns me most is this. Could there be other M.E. sufferers locked into this vicious circle and who are ready physically to be let out but are without the key that would enable them to escape that circle. The key for me has turned. Has the M.E. Association considered the possibility that it could also be a possible help to others?"

There's a joke in there somewhere, something about the MEA showing Riley the door.

The letter seems to have been written in response to an article in the MEA newsletter by Chalder and Butler titled 'Facing the issues'.
 
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is he suggesting everyone gets a trip to Australia at 2.5yrs?

The ‘5 weeks since I’ve arrived’ makes it sound like he’s preaching from the other side of the world in the sunshine to everyone in the Uk he left behind ‘fir his health’ and the main lesson seems to something different to actually doing as he did?
 
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“The MEA cannot listen only to the few who are baying for blood, or only to the many who welcomed Neil's editorial.”

If true, that is very surprising. Why would “many” people with ME use their scarce energy to contact the MEA to welcome an editorial repeating advice we have all heard a million times from doctors, family, friends, total strangers and medical know it alls of all stripes? “Many” people don’t write in to Sainsbury’s to thank them for selling milk. What would be the point?

And why are these people contacting the MEA but not commenting on social media? If there are so many of them, surely they would have no fear of pile ons? If they’re not on social media, how do they know the MEA is under pressure and that they need to express support?

Unless of course these “many” people are mostly not people with ME at all, but people professionally associated with the fear of movement belief i.e. MEA’s friends at BACME. They have every reason to welcome an editorial which might help to prop up their broken business model a little longer, and every reason to do it privately rather than publicly.
 
https://valerieeliotsmith.com/2022/...iny-identities-revealed-in-charity-complaint/
Worth reading Valerie's blog post about some emails from Riley. After chastising her for the 'strident' tone of her earlier blog post, Riley provides her with advice which also seems to include warm sun:
You might care to read that very old book “How to win friends and influence people“. That phrase has, regrettably, come into disrepute. But the book shows a deep understanding of people and how you can influence them. Shouting at them rarely works.

I like the fable about the wind and the sun in their attempts to divest a man of his coat. Bluster from the wind, failed. But the warmth of the sun, worked.
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There's a lot of irony there.
(Edited to add: read the whole blog post - Riley's criticism seems misplaced and takes a phrase out of context.)
 
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Trish said:
https://bsky.app/profile/mayalindemannrn.bsky.social/post/3lbteqexpfs2n
Post on Bluesky:
@meassociation.bsky.social
epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood” MEA can’t help but show contempt for the ME community.
The post includes a screenshot of a reply from the MEA which says:

Replies on Bluesky are assuming Caroline is the magazine's editor Caroline Cavey.

So the MEA gets it badly wrong again, insulting people with serious concerns as 'baying for blood'.

Unbelievable.
Click to expand...
Aren’t four of those categories basically different ways of flagging the same issue: that Neil’s article was not on?

and i think they can assume that includes his non apology

so then there are apparently some who have sent praise of something (Neil and his article? Or eg Charles shrpherd?)

anyway they’ve a petition of 1000 so have they clocked (or got the petition in order to clock) is those emails are saying the same thing as tgsf petition as a whole message?
 
Hutan said:
https://valerieeliotsmith.com/2022/...iny-identities-revealed-in-charity-complaint/
Worth reading Valerie's blog about some emails from Riley. After chastising her for the 'strident' tone of her blog, Riley provides her with advice which also seems to include warm sun:

There's a lot of irony there.
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Eek I think he thinks that book was an actual psychology science textbook ?

the good thing for him is it tends to be a title one can pick up from the airport bookshops

yes that last one is better known from aesops fables isn’t it and commonly used at primary school assemblies as he will know full well, so I’m not sure he’s kidding anyone that the aim of his message is to ‘be helpful’

It seems it’s hard to come up with a comment that isn’t underplaying his own words. They are textbook in themselves

I second @Hutan in pointing people to read the full blog post
 
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bobbler said:
so then there are apparently some who have sent praise of something (Neil and his article? Or eg Charles shrpherd?)
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On their Facebook page I did recently notice several comments of praise for Charles Shepherd that seemed more fulsome than the post might warrant and wondered if they were by people aware of the current controversy that sought to defend him personally. Understandably for many Charles is the MEA and undoubtedly he has done an incredible amount of work for our community, however as already said there are significant risks when an organisation becomes over dependent on a small number of individuals.
 
Extracts from the MEA's Mission Statement:

https://meassociation.org.uk/mission-statement/

"We don't employ an expensive CEO. Instead we have an [sic] terrific group of trustees who provide strategy and management on a voluntary basis. Trustees are supported by an experienced team of full and part time staff who are committed to supporting the M.E. community."


"Website and Social Media
"The ME Association's website and social media platforms continue to attract strong numbers of visitors with reach and engagement rates showing we are being effective."
​

They are certainly being "effective" in shutting down "engagement" on two current, significant issues of concern.

And reading through their "Community Guidelines and Standards":

https://meassociation.org.uk/community-guideline-and-standards/

"3 When posting comments in the community or sending private messages to the charity, please choose your words carefully and do not use language that is threatening or offensive. Sometimes words that you deem acceptable or are written with passion may be taken as offensive.

"4 Maintain a respectful tone, especially when discussing passionate or controversial issues. We realise this can be difficult for people with cognitive problems, but we recommend you read your comments carefully before posting them."

​
I'm sure I'm not alone in considering that framing and minimising legitimate concerns as "the few who are baying for blood", as Ms Cavey, the MEA's freelance magazine editor and literature designer, has written, extremely offensive. (As was the way Neil Riley addressed barrister, academic and former PR executive, Valerie Elliot Smith.)

A guideline and standards for trustees, staff and freelancers for communicating is urgently required.
 
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Dx Revision Watch said:
Extracts from the MEA's Mission Statement:

https://meassociation.org.uk/mission-statement/

"We don't employ an expensive CEO. Instead we have an [sic] terrific group of trustees who provide strategy and management on a voluntary basis. Trustees are supported by an experienced team of full and part time staff who are committed to supporting the M.E. community."


"Website and Social Media
"The ME Association's website and social media platforms continue to attract strong numbers of visitors with reach and engagement rates showing we are being effective."
​

They are certainly being "effective" in shutting down "engagement" on two current, significant issues of concern.


And reading through their "Community Guidelines and Standards":

https://meassociation.org.uk/community-guideline-and-standards/

"3 When posting comments in the community or sending private messages to the charity, please choose your words carefully and do not use language that is threatening or offensive. Sometimes words that you deem acceptable or are written with passion may be taken as offensive.

"4 Maintain a respectful tone, especially when discussing passionate or controversial issues. We realise this can be difficult for people with cognitive problems, but we recommend you read your comments carefully before posting them."

​
I'm sure I'm not alone in considering that framing and minimising legitimate concerns as "The few baying for blood", as Ms Cavey, the MEA's freelance magazine editor and literature designer, has written, extremely offensive. (As was the way Neil Riley addressed barrister, academic and former PR executive, Valerie Elliot Smith.)

A guideline and standards for trustees, staff and freelancers for communicating is urgently required.
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She’s not marking her own homework by being the one looking into this and taking the complains is she?
 
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