United Kingdom: ME Association governance issues

So they have shut down that avenue of communication on the topic? Great.

 

most people/members who aren't on social media probably haven't the faintest idea who Findley is, apart from what the MEA have told them (particularly as his clinic closed 10 years ago).

 

Deleted previous post as a bad job.

Basically I mean to say and I hope it makes sense -

The MEA reference to social media posts and asking for emails could be because this is actually a serious business they have to to take seriously. I haven’t read anything other than this thread, but understand that posts of concern and with experiences have been made on several social media platforms. I guess some posts were anonymous or semi anonymous due to the use of usernames, or not full names. To look into this properly I can see that the MEA would want to collate complaints by email for the trustees to consider. They may want to correspond with some people for more details. I don’t think there is necessarily any slight to patients in it, though I acknowledge that the tone in some of the communication has seemed a bit defensive. Emailing might well be difficult for some patients.

 

The way this is being handled — the “primarily on social media” line and the deletion of Facebook threads — I would describe as “shameful”.

“social media” is especially tone deaf… think about who else talks about the crazy patients harassing them on social media…

 

Those were my thoughts as well. The MEA really needs to sort out its attitude and communications. Comments about "social media" belong in a time capsule at best and are a throwback to a time when narratives about us could be controlled and shaped with no ability to reply.

I am disappointed that it is no longer possible to communicate with the MEA or - worse - with other people given the deletion and closed comments. I personally found it comforting to be able to see other people's experiences with Findley and to be able to interact with people; to see the reality that I wasn't the only one who had difficult experiences was upsetting but cathartic and helpful, ultimately. Seeing the support of the community was touching. It was healing to see that we could reach out to eachother and come to terms with everything. Deleting this/restricting access to it is wildly inappropriate.

 

Also it's a dumb response. They're gonna talk to Findley about the allegations... and then he'll say "no I didn't do those things", and then what?

 

https://twitter.com/user/status/1448710657235378176


https://twitter.com/user/status/1449042568075952135


https://twitter.com/user/status/1449043874651987977


https://twitter.com/user/status/1449088569079906306

 

"legal action could be taken against [...] the maker of the allegation"

"damaging to his personal and professional reputation"

What about any legal action that could be taken against Findley as the result of the allegations? If you are going to say this, why not say that as well? What about the damage done to patients? Why are all of the statements coming out of the MEA centering Findley in a context of allegations of mistreatment?

 

I was concerned that this was not getting enough attention. One does not need to "investigate" much as Findley's comments are available online. The most helpful thing he (or the MEA) could do for patients at this stage is to unequivocally and explicitly repudiate them at the very least.

 

Sorry I haven't read all the stuff on this thread; have the MEA anywhere said why they suddenly decided to appoint Findley as a patron now?

 

Not that I am aware of, and with the comments on Facebook having been deleted it's not possible to review these.

At one point, IMMS, Dr Shepherd had said (in defence of this decision?) that Findley had signed one of the joint letters. Possibly the invitation to join the list of Patrons flowed from that, but I don't know.

 

Professor Findley withdraws as Patron of the ME Association

https://meassociation.org.uk/2021/10/professor-findley-withdraws-as-patron/

 

Mmmm.

 

Perhaps next time the MEA considers inviting a new Patron (and what purpose do they actually serve?) the BoT will consult the membership first.

 

Well done to everyone involved in highlighting what Professor Findlay has been up to. A victory for common sense.

 

TYMES Trust Patrons:

Lord Clement-Jones CBE
Tymes Trust Founder Patron

John Whittingdale OBE, MP
Secretary of State for Culture, Media and Sport

Earl Howe
Parliamentary Under-Secretary of State at the Department of Health

The Countess of Mar
Princess Helena Moutafian MBE
Terry Waite CBE
Shirley Conran OBE

Remembering
Lady Elizabeth Anson, cousin to the Queen, and Dame Barbara Windsor
Patrons of Tymes Trust for many years
Such kind and generous people

----------------

ME Association Patrons:

HRH The Duke of Kent KG GCMG KCVO
Etain, Lady Hagart-Alexander
The Countess of Mar
John Rutter CBE (composer and founder of The Cambridge Singers)
Professor Derek Pheby

----------------

Action for M.E. Patrons:

We are proud to count on support from five Patrons:

Lord Melvyn Bragg
Julie Christie
Prof Anthony J Pinching
Lord David Puttnam CBE
Alan Cook CBE

----------------

25% ME Group Patrons:

Dr. Byron Hyde

 

This may sound petty, but Findley called it "CFS/ME" in his statement. Other issues aside, it is unlikely he would have been very helpful.

 

Does anyone happen to have the most recent Annual/Financial/Trustee Report from the MEA? It's not on their website.