United Kingdom: ME Association governance issues

I think part of the problem is that MEA have for some time bought in to the idea of having a range of treatments rather than one size fits all and having services delivered by multidisciplinary teams.

I have no real idea why they go for this other than that there is a widespread meme about that individualised treatments and multidisciplinary teams are friendly, patient-centred and 'on message'.
 
I think people with ME who may have had some elements of supportive care from individuals within the current structure make that known. The charities also have contact with NHS people and see them as doing their best. Shuffling deckchairs will not get us to a functioning service for PWME
 
TiredSam said:
The BPS approach, LP, GET, all of this quackery only "works" if the patients voice is completely ignored, not only by the doctor, but the treatments also consist of brainwashing the patients to ignore themselves.
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Off-topic, and no doubt it's been thought of before, but BPS works very well as an acronym for the 'Brainwashing Patients Society'.
 
Charles Shepherd on Fabebook just now (I think I'm allowed to share as it's not personal etc):

I’m sorry but it has been a very busy day - which is why I’m still working well into Friday evening trying to get our new flu vaccination leaflet ready - and have not been back to this discussion today to do any more replies
I have known Professor Findley for about 35 years - dating back to the 1980s when there was a group of doctors, including Dr Melvin Ramsay, Dr Gordon Parish and Professor Peter Behan, who used to regularly meet as the ME study group
After Melvin’s death the group widened its remit and membership and we became the Melvin Ramsay Society (MRS)
We were all doctors who believed that ME was a serious physical/neurological disease and membership of the MRS included doctors like Betty Dowsett - who worked with Professor Findley at the Harold Wood Hospital in Essex
Professor Findley was elected by his peers on this group to become Vice President of the MRS and later President of the MRS
During this six year period there were never any complaints to the MEA or the RRF from either patients or professional colleagues
At this time the MEA office was in Essex - so I/we also had a very close relationship with the hospital-based ME service and the National ME Centre - which Professor Findley helped to set up - and what was the only in-patient unit for assessment and management of people with severe ME
We never received any complaints during these years - which is why Professor Findley was placed on our very small list of consultants that we could recommend if someone required a private consultation or a legal report that would be used in court. He remained on that list for probably around 20 years until his retirement
Again, we never received any reports from people who were unhappy with these private consultations or legal reports and Professor Findley has appeared in court on numerous occasions as an expert witness for people with ME/CFS
Some people did not find that the approach to management suited their needs but many others did and there were even media appeals to help people from all over the UK to travel to Essex for both out patient and in patient services
Professor Findley has strong opinions and is a forthright personality which some people clearly find difficult
But I have never experienced anything that could be described as bullying or abusive behaviour
So the negative reports that have appeared alongside all the very positive reports have come a surprise
They are not being ignored and I will be discussing this matter with MEA trustees next week
Finally, as already noted, Professor Findley is the only UK neurologist to sign the letter to NICE in support of the new NICE guideline on ME/CFS that no longer recommends the use of CBT, GET or the Lightning Process as treatments for ME/CFS
Dr CS MEA

(my bolding) These bolded comments in particular are an absolutely disgraceful way to respond to these patient experiences and allegations.
Who was there to "report" or complain to? "Why didn't you report"? You don't complain to the place, you just leave; it's scary.

Translation: "He never abused me and I never witnessed it?" Seriously?
Trying to play this off as people not getting along with Findley's personality is shocking.

Bringing up the fact that people had nowhere else to go only highlights the terrible situation patients were - and are - in.
 
Ariel said:
Translation: "He never abused me and I never witnessed it?" Seriously?
Trying to play this off as people not getting along with Findley's personality is shocking.
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Exactly. I'm pretty sure I could have found multiple of my ex-husbands friends and colleagues who would have said this about him. Didn't mean he didn't physically and emotionally abuse me. CS needs to go and read up on domestic abuse and why it is so hard to escape. It's pretty much the same kind of abuse so many ME patients have suffered, but in their case the abuse came from the professionals who were supposed to support them.
 
An extra comment from Charles Shepherd (responding to someone who is understandably unimpressed with what he had to say tonight):

"I am not saying that anyone is lying. What I am saying is that to the best of my knowledge nobody reported these serious allegations to his professional colleagues or the MEA at the time. As noted above, these allegations are being noted and taken seriously and I will be discussing this matter with MEA trustees on Monday. Dr CS MEA"

EDIT:
Another:
"I'm very sorry to read about what has happened to you. People must report cases of physical or verbal assault by a health professional to the the relevant regulatory body - hospital trust, GMC etc Dr CS MEA"

Editing to add this last one because really? It's incumbent on the patient to do this, or? This is completely unrealistic and goes against what it's like to be an ME patient and actually try to get care. You are going to make complaints? You "must"?
 
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Simbindi said:
Exactly. I'm pretty sure I could have found multiple of my ex-husbands friends and colleagues who would have said this about him. Didn't mean he didn't physically and emotionally abuse me. CS needs to go and read up on domestic abuse and why it is so hard to escape. It's pretty much the same kind of abuse so many ME patients have suffered, but in their case the abuse came from the professionals who were supposed to support them.
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Exactly!! I am sorry to hear of your ex-husband. :( it's worrying that CS doesn't seem to understand basic abuse dynamics given the fact that he works for an ME charity. Unfortunately these abuse dynamics are the issues many of us have faced in contexts with health professionals. Currently, this is being perpetuated by the MEA in their public comments, rather than addressed appropriately.
 
Ariel said:
Charles Shepherd on Fabebook just now (I think I'm allowed to share as it's not personal etc):

I’m sorry but it has been a very busy day - which is why I’m still working well into Friday evening trying to get our new flu vaccination leaflet ready - and have not been back to this discussion today to do any more replies
I have known Professor Findley for about 35 years - dating back to the 1980s when there was a group of doctors, including Dr Melvin Ramsay, Dr Gordon Parish and Professor Peter Behan, who used to regularly meet as the ME study group
After Melvin’s death the group widened its remit and membership and we became the Melvin Ramsay Society (MRS)
We were all doctors who believed that ME was a serious physical/neurological disease and membership of the MRS included doctors like Betty Dowsett - who worked with Professor Findley at the Harold Wood Hospital in Essex
Professor Findley was elected by his peers on this group to become Vice President of the MRS and later President of the MRS
During this six year period there were never any complaints to the MEA or the RRF from either patients or professional colleagues
At this time the MEA office was in Essex - so I/we also had a very close relationship with the hospital-based ME service and the National ME Centre - which Professor Findley helped to set up - and what was the only in-patient unit for assessment and management of people with severe ME
We never received any complaints during these years - which is why Professor Findley was placed on our very small list of consultants that we could recommend if someone required a private consultation or a legal report that would be used in court. He remained on that list for probably around 20 years until his retirement
Again, we never received any reports from people who were unhappy with these private consultations or legal reports and Professor Findley has appeared in court on numerous occasions as an expert witness for people with ME/CFS
Some people did not find that the approach to management suited their needs but many others did and there were even media appeals to help people from all over the UK to travel to Essex for both out patient and in patient services
Professor Findley has strong opinions and is a forthright personality which some people clearly find difficult
But I have never experienced anything that could be described as bullying or abusive behaviour
So the negative reports that have appeared alongside all the very positive reports have come a surprise
They are not being ignored and I will be discussing this matter with MEA trustees next week
Finally, as already noted, Professor Findley is the only UK neurologist to sign the letter to NICE in support of the new NICE guideline on ME/CFS that no longer recommends the use of CBT, GET or the Lightning Process as treatments for ME/CFS
Dr CS MEA

(my bolding) These bolded comments in particular are an absolutely disgraceful way to respond to these patient experiences and allegations.
Who was there to "report" or complain to? "Why didn't you report"? You don't complain to the place, you just leave; it's scary.

Translation: "He never abused me and I never witnessed it?" Seriously?
Trying to play this off as people not getting along with Findley's personality is shocking.

Bringing up the fact that people had nowhere else to go only highlights the terrible situation patients were - and are - in.
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I'm not sure how this process was supposed to play out. Why would people complain to the MEA about one physician in particular? Especially when so many are nasty and higher profile. Problem is he clearly has no idea what ME is and that's disqualifying on its own.

What a dumb own goal.
 
Seems like not only does this appointment need reconsidering, but also maybe Dr. CS needs to be reigned in as well?

Setting aside the substance of the debate, the way that this has been communicated by CS and MEA strikes me as incredibly unprofessional. Just digging the hole deeper and deeper, while unnecessarily antagonizing dozens of patients, many of whom are ostensibly dues-paying members of MEA.

As some may remember, there was recently another incident where Dr. CS made a statement on social media cautioning against the use of Abilify. Again, regardless of one agrees with this statement or not, they seem to be totally unaware (or simply uncaring) of the controversy and divisiveness that they are causing.
 
Apparently posted around 11.55pm:

"I am not shaming anyone for not reporting abuse. I am asking people to report abuse to the regulatory authorities and/or charities. Unless we are made aware of abuse taking place we cannot do anything about it. As an example I was informed about someone with more severe ME not receiving appropriate care and support in a residential care home a few months ago. This was then raised with the care home managers and suitable training of staff on how to care for someone with severe ME was then offered. Sadly, it was not taken up - but I did try. Dr CS MEA"

This anecdote is not appropriately relevant to the matter at hand, and he does not seem to understand the criticisms he is getting about his comments. Just more doubling down. "I did try"? Should he not have reported the matter to someone?
 
I agree this situation has been handled very badly by CS and the MEA. I am not seeking to make any excuses for them, but I think this situation reflects a wider problem with the MEA and it's leadership.

So far it seems to be all being left to CS to deal with the social media reaction to the appointment, and he's not handling it well.

So where are the other trustees and staff of the MEA? Why have they left this situation to get into such a mess? Why hasn't the chair of the trustees stepped in to give a clear message that people's experiences have been listened to and action will be taken? Why haven't they immediately suspended Prof Findley's appointment as a Patron, pending further Investigation?

In these days of social media where bad publicity can ruin an organisation's reputation within hours, they really need to have more gumption to act fast and really listen to what they are being told by their members.
 
Trish said:
I agree this situation has been handled very badly by CS and the MEA. I am not seeking to make any excuses for them, but I think this situation reflects a wider problem with the MEA and it's leadership.

So far it seems to be all being left to CS to deal with the social media reaction to the appointment, and he's not handling it well.

So where are the other trustees and staff of the MEA? Why have they left this situation to get into such a mess? Why hasn't the chair of the trustees stepped in to give a clear message that people's experiences have been listened to and action will be taken? Why haven't they immediately suspended Prof Findley's appointment as a Patron, pending further Investigation?

In these days of social media where bad publicity can ruin an organisation's reputation within hours, they really need to have more gumption to act fast and really listen to what they are being told by their members.
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@Russell Fleming
 
I agree @Trish. We all know that CS works hard for people with ME/CFS. But he's one man, and his perspective is shaped by his background, including his training as a doctor and his personal connections. The whole point of a Board and a staff is that there are people who can bring different perspectives and skills and more time to a problem. At the moment, CS seems to be having to deal with the criticism of the choice of Patron on his own. There should have been people in MEA able to speak up before such a bad choice of Patron was made.

It's not just the patient experiences that should have rung alarm bells. There is plenty of evidence available on the internet indicating that Findley is far from suitable for the role of Patron of an ME/CFS patient advocacy organisation.
 
Trish said:
...Why haven't they immediately suspended Prof Findley's appointment as a Patron, pending further Investigation?

In these days of social media where bad publicity can ruin an organisation's reputation within hours, they really need to have more gumption to act fast and really listen to what they are being told by their members.
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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.
 
Ariel said:
Charles Shepherd said
"I'm very sorry to read about what has happened to you. People must report cases of physical or verbal assault by a health professional to the the relevant regulatory body"
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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
 
Trish said:
I agree this situation has been handled very badly by CS and the MEA.... but I think this situation reflects a wider problem with the MEA and it's leadership.

So far it seems to be all being left to CS to deal with the social media reaction to the appointment, and he's not handling it well.

So where are the other trustees and staff of the MEA?
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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"
 
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