United Kingdom: ME Association governance issues

That would be my impression judging by the transcript of the interview.
PWME need advocates who understand the level of ignorance within the medical profession, not those who profess to know the answer.

 

Wow. I thought the ME association was one of the good ones? This is very disappointing, based on the interview transcript above. Would stop my support of the ME Association.

 

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.

 

What on earth are they thinking?!

 

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??

 

This is odd and disappointing. We know for a fact that playing nice with the ideologues gets us nowhere, this is a terrible decision.

 

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.

 

Letter written by Findley on Sophia Mirza case during the sequence of events which led to her being sectioned, from the following document archive maintained on the website: http://www.sophiaandme.org.uk/documents index.html

Here is the letter.

http://www.sophiaandme.org.uk/docsindex/59+59a.jpg

Context: patient is ill for 5 years, deemed unusually long.
"Clearly Miss Mirza needs to be taken out of the environment she is in" (from his letter)

 

Shall I expect a certain Dame to be invited to the table and appointed patron next?

It would appear to make nearly as much sense.

 

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.

 

He was already "treating" patients with a 'programme of activity' in 1996, as can be seen from this advertisement-disguised-as-news:

https://twitter.com/user/status/1445739199877898242



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.....?

 

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.