United Kingdom: ME Association governance issues

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JohnTheJack

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2021 Appointment of Professor Leslie Findley to be patron of the MEA - starts in this post, notice of his withdrawal here

2024 AGM, company documents, trustees, historic governance issues discussion starts here


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This post copied and many subsequent posts moved from United Kingdom: ME Association news

News here.
https://meassociation.org.uk/2021/10/welcome-to-our-new-mea-patron-professor-leslie-findley/

We are pleased to announce that Professor Leslie Findley has agreed to become a Patron of the ME Association.
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He has been mentioned as a supporter of the
https://measussex.org.uk/about-us/medical-advisors/

A link to this transcript of an interview has been posted on Twitter.
https://meagenda.wordpress.com/category/professor-findley/

I'm not sure an organization for ME should have him involved.
 
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I am actually shocked :(

This is a very bad idea. I have seen him as a patient several times, including some appointments many years apart.
I have an extremely unfavourable opinion. Among many issues I did not find matters to be handled in an honest, practical, or appropriate way. We were very glad to get away from that place never to return.

"he is always excellent and entertaining company" https://meassociation.org.uk/2021/10/welcome-to-our-new-mea-patron-professor-leslie-findley/
As this is a public forum I will not repeat what this person has said to me or how they treated me.

Does anyone know what is happening here?

I am sorry for the comments; I am somewhat bewildered and would appreciate any context anyone has to offer. My understanding was that this person's practice was fairly harmful in various ways.

Edit: "I think the Lightning Process has a part to play in the management of some patients." As this is in the transcript - and this was a comparatively minor issue - I believe he tried to sell LP to me, although he didn't call it that. He was very slippery.
 
From ME Association post on Severe ME week 2020 about Sophia Mirza's story:
https://meassociation.org.uk/2020/08/severe-me-week-2020-sophias-story/

Edit for clarity - Sophia Mirza's mother is quoted:

"In 2001, Dr.Firth approached Professor Findley at Oldchurch Hospital in Romford, telling me, for legal protection of the G.P. and the surgery. Sophia asked me to research the clinic, which cost thousands of pounds. They told me, when I pressed them for long-term results, that patients usually revert to the point from whence they started. I spoke to a couple of ex-patients who were afraid to have their names used; they said that this clinic was run on the lines of mental health and used Graded Exercise, although it claimed to be a neurological clinic. They also said that when patients did not get better that they were given a different diagnosis before being sent home. Sophia elected not to go to the clinic.”...
“I was told that if Sophia refused to go to Oldchurch Hospital in Romford, or if she did not recover within the following 6 months, that she would be sectioned under the Mental Health Act..." "

Yep. This is the same person, right??
 
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@Russell Fleming, can you please explain why Professor Findlay was thought to be an appropriate person to be patron of the MEA.

It's extremely disappointing when the organisations set up to promote the interests of people with ME/CFS and who take funds from people with ME/CFS to do that, act in ways that harm people with ME/CFS.
 
Ariel said:
They also said that when patients did not get better that they were given a different diagnosis before being sent home.
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Well that's a novel cop-out BPS strategy I've not encountered before! Our Cr@p treatment didn't work for your Condition X, which must mean you don't have Condition X. So we will re-diagnose you with Condition Y, just to make it clear we have washed our hands of you.

The Slopey Shoulders R Us school of medicine.
 
I am so grateful for the S4ME forum, a place where members actually have influence and sensible decisions are made by our committee representatives. This seems an appalling and irrational decision by the MEA, I would definitely not join them while this person is their patron.
 
radio transcript linked by JohnTheJack said:
Professor Findley: I would, there aren’t robust figures and I think Charles is right, we would normally say that the average duration taken across the group, the average duration of this type of illness is three to five years with at least 40% of patients never getting back to previous levels of functioning and I’d agree with Charles there is the very severe group and their prognosis is appalling and they very rarely get any proper management advice.
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That radio interview was in 2010 and so perhaps Findley has learned something since, but he was running a CFS diagnostic and management clinic in 2001 when he wrote the letter about Sophia. So, if he was paying any attention at all, he definitely should have known better by 2010. Maybe, technically, mathematically, the average duration of the illness is three to five years because there are lots of people who recover in the first three years and few people who recover after that. But that average doesn't properly represent the epidemiology of the illness. Findley's comment greatly underplayed the impact of the illness.

To suggest, as he does in that letter about Sophia, that someone being seriously ill for 5 years is so unusual, knowing that his confident assertion would be taken as evidence to support the labelling of Sophia with mental illness... Words fail me.

As I say, maybe he is now much better informed, perhaps he can even be helpful in making things better. But, for the MEA to think that a person with that background is appropriate to be its patron? It seems calculated to turn members away from the organisation.
 
The letter states that either she needs to go to psychiatric care or my "fatigue bed" service, on very little basis. I don't see how anyone can read that letter and think that this person has an appropriate way of dealing with matters in general, let alone in the context of ME, or in the case of a highly emotional (to some members of the community) patient death that the MEA have used in their own materials.

Re: my own experiences. They recommended in-patient care to me both times following my initial appointment. The first time I was mild (it seemed absurd that they were recommending this). The second time I was much more severe. It was just a standard thing they did it seemed. Same letter seeing if we would come. It cost thousands of pounds. They would not say what "treatment" would be received, if any. Just that it may be better to be taken out of one's environment. (££££) We did not do this, of course.

I have not seen Findley for some years, but certainly by around 2010ish he did not sound as though he had changed much. I tried to work with him although it was extremely difficult due to the nature of his practice and due to his own inappropriate and in some cases bullying comments. I was horrified to read this correspondence. What strikes me most with the benefit of hindsight is really the bullying and taking advantage of vulnerable patients, the dishonesty, and the way they would talk about people who did not get better.
 
Sarah said:
As probably many are aware, at one time Professor Findley was set to run his own pilot on the Lightning Process, and had developed a LP analogue with co-workers, called neurobehavioural training, for which a dedicated website was developed but apparently no longer exists. There was also anecdote on the Bad Science forum dating back to 2011 re a Queen's Hospital in patient stay at the CFS Unit and Professor Findley's involvement with LP at that time. Interesting to note that both he and Esther Crawley are medical advisors to the Sussex & Kent ME/CFS Society.
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2018 post by Sarah. Click on the arrow to read more.
 
I have just read the comments on the MEA Facebook page about this appointment. A few say they had a good experience of Prof Findley, but the majority are shocked, horrified, reporting bad experiences, and asking questions.
 
Hutan said:
he was running a CFS diagnostic and management clinic in 2001 when he wrote the letter about Sophia. So, if he was paying any attention at all, he definitely should have known better by 2010.
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He was already "treating" patients with a 'programme of activity' in 1996, as can be seen from this advertisement-disguised-as-news:




So, I understand he is is a longtime exercise-cures-ME proponent AND practitioner (got income from it), unpleasant, fan of the LP, and played a part in Sophia Mirza getting sectioned to her death.

And the MEA thought to accept this smashing chap because.....?
 
Ariel said:
They would not say what "treatment" would be received, if any. Just that it may be better to be taken out of one's environment.
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Ariel said:
"Clearly Miss Mirza needs to be taken out of the environment she is in" (from his letter)
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Standard hysteria "treatment": 'women are susceptible and oversensitive, if you take them away from the surroundings that influences them into behaving ill/having symptoms, then they will stop it, especially when abused guided by me (which incidentally is much easier when there aren't loved ones of the patients observing what I am doing to her)'

This was also part of the earliest ME BPS narrative, via Wessely's '87 "mass hysteria" article: ME patients were behaving abnormal because misguided/stupid doctors and family members treated them as being ill.

Just this misogynistic attitude alone should have disqualified Findley from any involvement.
 
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