United Kingdom: ME Association governance issues

Wyva said:
I know I sound like a stalker but if anyone is interested: the original post about becoming a patron has been deleted both from the MEA website and Facebook. This is what you can read in the comment section of today's FB post: ME Association limited who can comment on this post. (I'm a follower of their FB page and I couldn't comment.)
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So they have shut down that avenue of communication on the topic? Great.
 
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.
 
Ariel said:
So they have shut down that avenue of communication on the topic? Great.
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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…
 
5vforest said:
“social media” is especially tone deaf… think about who else talks about the crazy patients harassing them on social media…
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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.
 
"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 am surprised the MEA has not already cancelled the appointment of Professor Findley as Trustee on the basis of the evidence that has been provided to them of things Findley himself said about LP, and about being able to tell which patients need which 'treatment' etc. That should be sufficient on its own to make him completely unsuitable as a Trustee.

Of course they must also take seriously the reports from patients about mistreatment, and that could take some time. But in the meantime they should have cancelled the appointment anyway.
 
Trish said:
I am surprised the MEA has not already cancelled the appointment of Professor Findley as Trustee on the basis of the evidence that has been provided to them of things Findley himself said about LP, and about being able to tell which patients need which 'treatment' etc. That should be sufficient on its own to make him completely unsuitable as a Trustee.
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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.
 
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.
 
Agreed. Before this i would have said they could have tested the reaction to a prospective patron by having an article about their involvement in the ME community in the magazine and seeing how people responded. Given the issues this time I think they probably do need a more formal approach to consultation.
 
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

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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
 
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