United Kingdom: ME Association news

I am afraid I have also lost confidence in Dr Shepherd. He has made a number of dismissive comments in the face of descriptions of abusive behaviour from traumatized patients. He also makes this signature from Findley sound like a magnanimous gesture, whereas it's the bare minimum from someone who has nominally devoted his career to - and likely made a huge profit from - ME patients.

(It's for this latter reason that I was non plussed by the decision to defend Findley by citing the help he gave to insurance claimants. He had an interest in doing so - in fact when I went to see him we paid out of pocket as the insurance company that my mother was covered by (I was under 26) denied the claim. Insurance companies covering ME/CFS were important to his private practice, so it was a bizarre thing to trot out as though he were a disability rights campaigner and fighting for a principle.)

 

The other Patrons are:

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

 

Simply awful. Am I paranoid or does it seems like a disguised attempt to infiltrate an ME organization, in order to confuse, divide and weaken the ME community ...?

Either way, the fact that Findley signed a letter endorsing Nice's new guidelines does not excuse his arrogance, unprofessional and cruel behavior towards patients. Revolting.

 

"Nov 2008 BBC Radio 4 broadcast an important
series of programmes which looked at different
aspects of M.E., from why it is such a controversial
illness to what treatments are available and the
current state of research.

"ALTERNATIVE TREATMENTS
On 8 November, You and yours looked at some of the
alternative treatments on offer for M.E. with Action
for M.E.'s principal medical adviser, Professor
Anthony Pinching, academic researcher and
homeopath, Dr Elaine Weatherley-Jones, neurologist,
Professor Leslie Findley, former GP David Mickel
and GP and homeopath Dr Susie Rockwell. "

p23
http://www.mesupportgroup.co.uk/Newsletter Summer 08.pdf

 

2009-03-26

https://www-dagensmedisin-no.transl...l=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=nui,sc

 

Good God ! It is exactly the gibberish defended by the Royal Colleges ... and he integrates the Me Association ? Dangerous. It really seems to me that someone should pass this on to CS.

 

CS has been indifferent on social media and I hope someone can get through to him that he has made a mistake for quite a few reasons - wrong attitude both to patients and to the issues at hand.

What do the MEA hope to achieve here? I'm sure Findley is trying to achieve something. Why help him? How does it serve the interests of ME patients?

What do you have to believe about ME/CFS to think this is all reasonable and above board?

 

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'.

 

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.

 

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"?

 

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.

 

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?

 

@Russell Fleming