United Kingdom: ME Association governance issues

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.

Ariel said:
He was sexist.
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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.
 
Ariel said:
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.
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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.
 
CRG said:
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.
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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.
 
I agree the handling of someone’s post about their negative experience by reposting someone’s positive experience is an extremely poor approach in terms of how to deal with any type negative feedback. Almost a textbook example of how not to do it.

And given the content of the experiences being shared it is inappropriately unfeeling towards those people. I am very disappointed.
 
Simbindi said:
  • We have relaunched the Real M.E. campaign, and are delighted by the response. We invite you to send in photos and short stories to provide some context. We want to show the world that ME/CFS is indiscriminate and can affect people of any age, from all walks of life, and can strike at any time. We also want to steer the media away from those awful and unrepresentative stock images. Your contributions will remain anonymous and we'll use your photos in the literatures we produce, the website, social media, and the members magazine.
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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:

 
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/

[...] the lightning process, which is the focus of a small independent pilot study conducted by Leslie Findley, a clinical neuroscientist who has spent decades working with Parkinson's disease, CFS and other neurological disorders.


Because he feels that CFS sufferers "are vulnerable to exploitation, and there have been all sorts of quackery and bogus treatments," Dr. Findley is very skeptical. But after tracking more than 100 of his own patients who have undergone the therapy, he feels that there may be something to it.

About two-thirds of his subjects seem to have some benefit. This is quite a bit short of the success rate lightning-process practitioners claim (they say that, done properly, it should work for everybody), but there is a measurable benefit nonetheless.

"Whenever something new comes along," Dr. Findley says, "I'm keen to see if it has anything to offer – and there's no doubt that this does." He believes the key is the way the process helps people manage stress, which accentuates any illness. For example, stress worsens the tremors in Parkinson's patients.

Does this mean that CFS really is all in the mind?

"No," Dr. Findley says. "The fact that we are changing the functioning of the stress system by a verbal technique does not imply in any way that this is psychosomatic – only a fool with a superficial understanding of the way the brain works would make this assumption."

But neither does he feel the tactic – which will reach Canada this spring when psychotherapist Maxine Henk, trained in the procedure by Mr. Parker, moves to Vancouver – is for everyone. "This is a collection of techniques packaged in a way that effectively helps some patients – but not all of them. I see it as another way of managing some patients, mainly those that haven't yet responded to much more simple approaches – the majority won't need it."

And in some cases, it could do more harm than good. "If a patient is offered this with the belief that they will get better because their recovery is entirely up to them," he says, "if it doesn't work, they could go off with more guilt and a sense of failure, which just perpetuates their stress and, therefore, their illness."
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"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 .
Prof_Leslie_Findley.jpg

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/
 
"The combination of graded activity and cognitive
behaviour therapy discussed is one approach to
treatment and management of CFS that could be
beneficial."

Cox, D. L.; Findley, L. J. (1994). Is chronic fatigue syndrome treatable in an NHS environment?. Clinical Rehabilitation, 8(1), 76–80. doi:10.1177/026921559400800110
url to share this paper:
https://www.sci-hub.ee/10.1177/02692155940080

"
The inpatient programme
The service functions as a multidisciplinary specialist team,
led and governed by the fundamental principles of occupational
therapy, capitalising on the theory of cognitive behaviour
therapy, fOllowing clinical evaluation. The team consists of
occupational therapists, a physiotherapist and counsellors,
supported by medical and nursing staff and an administrator.
A non-judgemental approach is required.
The treatment programme is individualised. Once on the
ward, the patient works one to one with an occupational therapist
in a graded activity programme within a therapeutic environment
using the principles of cognitive behaviour therapy.
All patients receive conventional medications as required.
Common problems include Sleep disturbance, pain and low
mood states."
Cox, D. L.; Findley, L. J. (1998). The Management of Chronic Fatigue Syndrome in an Inpatient Setting: Presentation of an Approach and Perceived Outcome. The British Journal of Occupational Therapy, 61(9), 405–409. doi:10.1177/030802269806100907
url to share this paper:
https://www.sci-hub.ee/10.1177/030802269806

eta:
Severe Chronic Fatigue Syndrome (CFS/ME):
Recovery is Possible
https://www.sci-hub.ee/10.1177/03080226070700
 
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So the MEA are going to the forthcoming NICE roundtable to argue against physicians putting their 'clinical experience' above the rigorous NICE science based evidence review, whilst in the preceding fortnight they decide to appoint a new patron who believes his 'clinical experience' is a license for him to promote quackery pseudoscience? Antidotally some 'ME/CFS' patients benefit from GET, so by that reasoning...

What is happening to our ME charities? How can there possibly be any kind of agreement amongst patient groups when one of the main charities reasons and behaves in this manner? Words are failing me.
 
I see the MEA response to the criticisms of the appointment of Prof Findley as a Patron on FB and Twitter is to post an additional piece on their website by Charles Shepherd defending the ME service run by Findlay, claiming they did only pacing and quoting a selection of the positive accounts by some people with ME from the Facebook discussion.

He has not directly addressed any of the personal accounts of harm, or the quoted documents that present a very different picture, except by ignoring thereby effectively denying them.

I think the MEA has lost the plot.

Surely a genuinely caring patient organisation would respond by expressing concern and sympathy and promising to look into the evidence and if necessary reconsider the appointment.
 
I saw Findley in 1996 or thereabouts in his private clinic. He was able to get my very severe chronic migraine under control and also diagnosed CFS. I was referred to an OT that taught pacing, from memory there wasn't GET or any funny business. Findley was somewhat arrogant but we didn't have many complaints at the time, he was helpful when all the NHS had offered was a child psychologist that told my parents to forcibly drag me to school(!).

I saw Findley again after a significant relapse in my migraine and CFS symptoms as a young adult, circa 2007. By this point unbeknownst to me my POTS symptoms were kicking off and leading to "anxiety" (really just the downstream result of uncontrolled POTS). POTS/OI was missed, Findley still acknowledged the immune elements of my PEM etc. but insisted I take SSRIs, which made me very poorly indeed.

I sent Findley an email explaining that I'd been on the starting SSRI dose for 5 weeks and felt terrible, with lots of new symptoms, and questioned the scheduled dose increase. I got an incredibly rude email back dressing me down, saying emails were not to have a dialogue but for specific clinical advice, which he had given me - take the meds or find another doctor.

Needless to say I stopped the SSRIs immediately and didn't go back for follow-up! And of course all the "anxiety" symptoms disappeared once I found appropriate treatment for the POTS...

--
Edit: I found the email from Findley in 2007:

This was his response to a very polite but concerned email from myself re the SSRIs:

"Ryan, I have a simple rule with my patients, whether they are private or
public, take my advice and treatment, or find another doctor."

Its worth noting that I was not officially diagnosed with any condition in which SSRI's are indicated, so far as I know.

Initially I was told they were to help with anxiety & energy levels, when I questioned why they weren't helping with my anxiety I was told "The purpose of SSRI's in this condition is not primarily to control anxiety".

Enough said I think!
 
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