United Kingdom: ME Association news

I agree it should be the Chair of Trustees making public statements in response to this situation. I think part of the problem is that CS sometimes takes upon himself the role of unofficial CEO (an office the ME Association has not had since Val Hockey stepped down in 2003/4). I've come across members of the ME community who were under the impression that CS "runs the MEA", whereas he is one of six trustees, plus three "Associate Trustees":

https://meassociation.org.uk/about-the-mea/patrons-trustees/

ME Association Board of Trustees
Chairman: Neil Riley
Vice-Chairman: Rick Osman
Trustees: Ewan Dale, Martine Ainsworth-Wells, Dr Charles Shepherd, Nicola Anson
Associate Trustee: David Allen, Nicki Strong
Associate Trustee: Sophie Belcher

and he is also an Honorary Medical Adviser.

He cannot receive remuneration for the role of medical adviser unless he was prepared to step down as a Trustee. He has been a Trustee continuously since the 2003 elections.

He was sacked from his role as Medical Adviser by the Board of Trustees under CEO, Val Hockey, in 2003, a role for which he had received an annual payment.

It seems to me that he sometimes assumes the role of spokesperson for the organisation in matters that would be more appropriately responded to by a Board of Trustees consensus statement.

 

Very difficult when you are sick, and have an ME diagnosis. At best you will get fobbed off and at worst there is always the fear of then being put forward for psych evaluation and all that might ensue thereafter.

 

I see that Professor Findleys clinic closed in 2011 (shortly after he had retired) and the reason was that it was only being used by 3-4 patients.
https://meassociation.org.uk/2011/0...-be-disastrous-ilford-recorder-12-april-2011/

The service was continued (don't know the details) and is on the MEA website (https://meassociation.org.uk/nhsspecialistservices/)

even though it clearly says
"Our approach is based on principles of Cognitive Behavioural Therapy and Graded Activity/Exercise Therapy."

https://www.bhrhospitals.nhs.uk/chronic-fatigue

 

I know much less about the structure of the MEA than others here, but I'd agree with Trish's analysis and concerns above.

 

From MEA Facebook page from earlier today (really had to dig to find this update as it was only in response to one person, name omitted):

"MEA trustees are discussing this matter today and we will issue a short statement when we have completed this discussion. Dr CS MEA"

 

Sadly, the way that CS is dealing with this does not surprise me. I've noticed that (on the MEA Facebook page) he often responds impatiently and defensively to patients who give critical feedback.

 

The associations in this line up do not inspire confidence ...

https://measussex.org.uk/about-us/medical-advisors/

 

The MEA and other organizations representing the interests of patients need to learn how to respond appropriately to those who have been affected by long-standing and horrifying medical and institutional abuse and neglect. Without addressing them and these issues properly, things cannot change in the way that they urgently must.

It is going to take a long determined fight to change things and to even begin to deal with the damage caused. The willingness has to be there, however. People cannot get decades of their lives back, but they can be spoken to and treated with respect going forward. It should start with our patient organizations, and spread outwards from there.

While CS often responds impatiently, this is a problem of a different order of magnitude due to the subject matter. We are talking about the abuse and neglect of a patient population. I was horrified by the messages I read, many of which read as attempts to minimize abuse or harm reports. I also noticed that he used the term "we", grouping himself together with Prof Findley, not with the MEA or - crucially - with patients.

The MEA should be an organization representing and advancing the interests of patients, not a lobbying or networking organization for professionals. Who is "we"? Who will represent us?

I continue to hope that someday we will be brought into the mainstream of medicine and normal medical practice (with all its flaws!). We really need representatives who understand the problem and do not align themselves in practical terms, in spirit, or in professional solidarity, with those who have harmed us for so long.

 

Absolutely.

 

Absolutely.

A lack of transparency
A lack of accountability
A lack of responsibility
A lack of strategy
A lack of communication

 

It's even worse than I thought as I just read this

"Dr Chaudhuri advises the ME Association on clinical and research issues relating to the neurology of ME/CFS and assists with the preparation of the MEA Clinical and Research Guide (The Purple Book). He trained with Professor Peter Behan at the Institute of Neurological Sciences in Glasgow and worked with Professor Leslie Findley when he was at Queens Hospital in Romford."

https://meassociation.org.uk/2021/1...urological-disorders-by-dr-abhijit-chaudhuri/

 

I have been checking back and have not seen anything since the last Facebook comment on Monday.

 

It was said that there would be a "short statement" about this, and nothing has happened as far as I know. Two full working days have passed since then.

 

I wonder how many have cancelled their membership of the MEA in the meantime.

 

You have to give them reasonable time. There are sensitive issues.

 

What is a reasonable amount of time to put out a short statement, particularly since the last communications were appalling and resulted in someone on Facebook saying they had to call their crisis team as a result?