United Kingdom: ME Association news

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.

 

It was GET and stealth LP, which he was vague about and called something else, dangling it in the future as something promising. He said he had a colleague who was doing this, and it felt like a scam, whatever it was. Felt like he brought in clients for someone else sometimes.

He would berate you for basically anything you were doing - too little, too much - whatever it is. Not using their expensive pointless in-patient service. Being sick. Being well enough to do activities. (He is the only doctor who ever got upset that I did too much - it didn't make me ill at the time. Why not? He thought I should not go on holiday, despite being well enough. He was very controlling.) He told me I did not want to get well. He shouted. He made inappropriate comments. He made strange comments about whether I had a relationship. He was sexist. They were very strong on the psychological component story and were fuzzy and misleading about the illness. Your symptoms are "real" but here's a handout about "stress" and "anxiety". It was all done in a stealth way.

He told me he didn't tell me I'd been at risk for relapse and to be careful when I was younger and mild ME/CFS following EBV because I was too young at the time to be told that. I had been 17. He had recommended in-patient care and gave me GET handouts. I thought I got better (I didn't do the GET or recognize it, it was just handouts and we were really going there for diagnosis) but I went back years later in my mid 20s after getting very ill, and tried again with him before stopping. I was basically at that time told I wasn't one of "those" patients who wouldn't recover. I was generally told anecdotes about "those people". You could not get any clear answers and the whole atmosphere was rude, condescending, and about complying with what they wanted you to do, which seemed fairly arbitrary. It was expensive and nothing was explained in an honest way. My parents, who are lawyers, came to consider them dangerous.

I was horrified to learn that I had been in contact with someone who had been involved in the Sophia Mirza case, and to read the correspondence. It frankly sounded like him. My experiences with this place were not that bad because I got away and had sensible family and frankly the experiences were so bad that it made you not want to go back; so many red flags. I feel quite traumatised seeing this come up. I am sorry to others who have had bad experiences.

 

I'm sorry you had that experience @Ariel . It sounds very harmful and rubbish, and goes to show how much freedom people like him have had to do whatever they felt like, to the detriment of patients, and not only get away with it, but build a reputation as a professional expert on it.

And abusive. Seems like a continuous characteristic of these guys.
Kendell for example, from the article I posted above, was a raging misogynist. And everyone was fine with it.

(I'm looking into some of Wessely and Sharpe's sources and finding clear misogynist stuff (ableist and racist too), and instead of deciding not to even touch it with a barge pole with such content, they use it as sources to build their fantasy theories on.)

 

The ME Association are doubling down in their Facebook comments. Repellant I'm afraid.

Edit: they are responding to people who have been harmed with a text of patient testimonials etc. It is horrible behaviour for a charity that is supposed to represent the interests of patients who have been harmed for so long. Gaslighting and lies.

 

That's the problem with trying to deal with an issue like that on Social Media - the side that feels it is under attack invariably goes into defence mode. I'd suggest the only way - and it may not be successful - to have Findlay disaccepted, will be via letters/email to the Chair setting out the evidence dispassionately.

There may be a strategy of levering off supporters from the BPS core, in which case the MEA may consider Findlay a notable scalp despite the optics. I suppose the adage that the only peace you make is with your enemies may also apply.

 

I am very upset, much more so after seeing their response. Is this really necessary? To retraumatize people to what end? I do not think this is justified and consider it quite likely that some people do not know quite how bad all of this is. Perhaps this is naive.

 

The MEA newsletter arrived in my Inbox today (I'm not a member but subscribe to receive it).

It states:

One of the reasons I never joined them in the past was I felt they seemed more for mild patients and possibly those with the short term, self-limiting, post viral fatigue type syndrome. I always felt alienated because of this. It seems that after their brief focus on severe ME, they are back to looking to promote the 'substantial improvement' stories. How representative of the ME population are these? Why do they think these stories are needed to give patients 'hope' when the skew is already towards the milder end of the ME severity spectrum (i.e. in the focus of the existing 2007 guidelines and NHS ''fatigue and pain' services)? To me the imbalance needs to be addressed the other way, towards getting the long term (decades for many of us) nature of ME recognised.

Edit: How meaningful is a 'before and after' image for most ME sufferers? The difference for me so far would be that I have aged 30 years...

 

This is their update on the NICE guidelines, for members interest here (they are under the same confidentiality agreement as S4ME, so understandably can't say much):

 

I can't see anything about the appointment of their new patron in the newsletter, but might have missed something.

 

It appears from that is that a statement is needed from someone as to when the confidentiality agreement expires. Is it at the conclusion of the meeting? Is it when NICE announces its decision taking into account the discussion at the meeting? Why has this not been publicised?

 

I just saw this on Twitter. Seriously, what's the use of "helping the world see" that ME affects "people of all ages and ethnicities" when you have just installed a patron that advertises that graded activity combined with looking at things from a different perspective, NLP (changing thinking and behaviour), hypnotherapy and reflecting on 'where you are at the moment and where you want to be in the future' will just remove these people's illness to the point of it not being a problem anymore, whatever their gender, age, social position or skin colour?


Edited to add source:

https://twitter.com/user/status/1445717775121412103

 

Exerpt from the Toronto Globe and Mail, 8 March 2008. Words by Zoe Cormier.
Hosted on the MEA website.
https://meassociation.org.uk/2008/03/a-canadian-take-on-the-lightning-process/

 

He tried to sell me on "NLP"; has the word "neuro" in it and he's a "neurologist".

 

words fail me

 

"NeBeT":

"Neuro Behavioural Training has its foundations in neurology.
This training programme was developed after many years of practice in the field of CFS (Chronic Fatigue Sydrome) or ME (Myalgic Encephalomyelitis) and post viral fatigue syndrome both within an NHS Neurosciences Unit and with The National ME Centre and Centre for Fatigue Syndromes in Essex.

It is influenced by many different therapies, treatments and theories including occupational therapy, clinical hypnotherapy, cognitive behaviour therapy, neurolinguistic programming and life coaching .

​

It has been developed by Susan Codd, Occupational Therapist and Clinical Hypnotherapist, together with Audrey Norman, NLP Practitioner, Clinical Hypnotherapist, Life Coach and Relate Counsellor.



Professor Leslie Findley, Consultant Neurologist and Clinical Director of the National ME Centre and Centre for Fatigue Syndromes in Essex has contributed to its development and Ged Codd, Chartered Physiotherapist and Judith Harding, Dietician and Nutritionist, both specialists in the management of CFS/ME have also contributed their expertise to aspects of the training."

From:

https://web.archive.org/web/20130425165713/www.nebet.co.uk/