United Kingdom: ME Association governance issues

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?

 

The problem is that even if the consultant heading up a CFS clinic understands the nature of ME, the only approach that can be funded by the NHS is GET and CBT as per the ****** NICE GDL. It was the same with Dr Bansal and the Sutton Clinic. Many PwME there did not even get to see Dr B, just a talk by the team to a group of us, then the option of physio, psychologist or nurse.
Seeing him privately enabled him greater flexibility with testing and potential treatments.

Dr Chaudhuri was at the same table as me at the Scoping table. He does understand the issues with GET/CBT, which is why he wanted to be involved with the GDL Committee. He was not appointed.
In common with other fatigue clinics about 40% had alternative diagnoses.
Someone who used to be in our ME group has found him very helpful with issues around reducing work hours etc.

 

Charles Shepherd replied to an email I sent, saying that they are taking allegations against Professor Findley seriously, discussing the allegations with him and the MEA is to release a statement tomorrow.

 

ME Association Trustee’s Statement re: the appointment of Professor Findley as Patron of the charity

"Following the appointment of Professor Findley as a new patron of the charity on 06 October, and while we have received a good number of messages supporting the decision from both charity members and non-members, there have been some notable objections and strong expressions of concern made primarily on social media. We are raising the concerns that have been expressed with Professor Findley, and will make a further statement once he has had an opportunity to respond.

• If anyone has further concerns in the meantime, then please email: contact@meassociation.org.uk

The ME Association Trustees"

https://meassociation.org.uk/2021/1...f-professor-findley-as-patron-of-the-charity/

 

"Made primarily on social media"; sounds derisive and strikes an inappropriate tone.

I am concerned that there is not enough focus on his record (as opposed to his conduct with patients). It would be great if Findley and/or the MEA repudiated the previous "treatments" and practices. It seems best to raise these issues in a letter, but I wonder if it's a waste of energy given how dismissive this statement sounds (at least to me).

Edit: just to clarify, the statement strikes me as not engaging with the substance of what has happened in terms of how people must be feeling, which is why I felt it was a bit off. Saying that they have had supportive messages as well in the context of the other messages is not a good way to respond given what this is about. I hope that makes sense. xx

 

Yes absolutely.
‘made primarily on social media’
contains implied criticism of the method of communication used by patients advocates & others.

Certainly a criticism of patients who did not write to MEA directly in addition to making their pain known publicly.

Possibly a criticism of all patients who’ve communicated pain publicly.

Evidenced by communications on this subject so far MEA unprepared for such a challenge.

Lastly they themselves have a social media presence. A space in which they are very active. At least when it suits their purpose.

So is this intended as a one way street in communication terms?

Or two way only where patient feed back is positive?

Or do the communication team or top level managers not understand the nature of the platform?

Do they consider social media trivial or distasteful?
Do they need to make this attitude formally known?
How do they respond to private correspondence?
How well do they utilise other channels for direct contact with patients who are already greatly disadvantaged in terms of communication?

Facebook and other host sites are highly problematic. May well have caused far more suffering than they have ever alleviated. It sounds as if MEA may have just alluded this.

I would be glad to know MEA were giving such an important pressing topic as harm caused via social media due and proper consideration.

For such seriousness to be evident MEA would need to examine their own reliance on this tool. To lead with clarity on this issue. Before reflecting publicly on others usage.

They might then have cause to reflect then on the extra difficulties for disabled people who are otherwise largely excluded from society by extremely difficult circumstances. Disabled people with ME who rely on social media as a tool to have any connection at all.

MEA would benefit from asking themselves why some have not been able or willing to restrict communication to MEAs own organisational channels.

“made primarily on social media”

Why not?

On social media others who are impacted or upset by MEA’s decisions will listen and provide support.

Will MEA listen to this distress and will they act upon what they hear?

This is unknown.

However past and present form would suggest not. This is all the experience patients and carers have to go on.

 

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.)