United Kingdom: ME Association governance issues

Unfortunately I can see the similarity in his general behaviour towards me.

Something I do remember clearly: He told me he was amazed that I had managed to get a 1st class BSc, but that he wasn't surprised that I had relapsed after trying to work full-time after graduating. The relapse was a result of my actions and he boasted that he could've "told me so" if I had still been seeing him...

 

Does that meet the normal operating definition of 'advice', or is it closer to the common usage of the word 'order'?

 

Happy to forward the original email chain to MEA parties for full context if they wish to see it.

I think Findley's lack of professionalism in my care is enough and there's no need to start with conjecture/hearsay, but when I did raise him coercing me to take drugs I was apprehensive about over email to another doctor they weren't surprised. This NHS CFS clinician was well aware of him and later told me they were amazed he was still allowed to practice.

 

Hmm, Prof. Findley was the person who gave my caree a diagnosis of ME, for which I guess we'll always be grateful. But that was only on a "day-trip" appointment, and we didn't have anything further to do with him after that, I can't remember if there was any particular reason why. As I don't really follow ME politics, I had been quite perturbed to see recently that he was involved with Kent and Sussex, but am starting to understand why

 

I just came across one of "those people" on Twitter. Putting it here for reference.

https://twitter.com/user/status/1445736002245447682


More on this patient's experience:

It was demeaning and unhelpful

https://twitter.com/user/status/1446025750172295169


And in keeping with bps ideology, he discouraged the patient to join a support group or learn information about her illness.

https://twitter.com/user/status/1446074233940021248


Some posts responding to this have been moved to this thread:
Who was it that said being in support groups leads to poor outcome?

 

There is an interesting aspect to the Findlay and Lightning Process story. It seems to have been said that he thought LP, or its equivalent, was suitable for a proportion of his patients. The following questions therefor inevitably arise:

1 How did he identify those patients?
2 What did he think they were suffering from?
3 Why did he diagnose them as having ME?

 

Very true.

Time and time again we see these clinicians saying what a heterogeneous bunch we are and that as a result we need a wide range of treatment options available. All sounds pragmatic and reasonable, until you appreciate there's no reliable way to tell us apart other than using their flawed intuition. Involve a consultant with the sort of incredible hubris that this guy has and it becomes especially harmful.

I'd probably give Findley a pass for not picking up on the POTS/OI & that SSRIs are contraindicated, 2007 was early days in awareness - but it illustrates that these clinicians don't seem to appreciate "you don't know what you don't know".

 

he's one of their medical advisers along with Alistair Miller and Esther Crawley.
Surely the MEA must be aware??

eta:
I don't know if the MEA have continued with this but from 2018...
https://www.s4me.info/threads/the-me-associations-continued-support-of-the-sussex-me-society.5852/

 

To be honest my impression of this was just largely ££££ and ego; people will do what they will get away with. He identified them presumably as he did with me - by dangling out the idea of a "treatment" and being vague and dishonest about it - he said some neurobabble - and seeing if anyone would go ahead.

 

Edit (responding to deleted quote):

I am sorry to hear that you also had bad experiences with him. He was outlandishly unprofessional - and I saw him as a private patient.

I think it's worth contacting the MEA. I have been too upset and had to remove myself from the situation. xx

 

So sorry you had this experience with him Ariel.
A longstanding friend of mine, with ME saw about 25 years ago, also privately. He told her she was "not fit to be a mother". She had a toddler at the time.

 

Thank-you. Unfortunately that does not surprise me. Someone should collect these stories and send them to the MEA. I hope people no longer support them if they do not withdraw this appointment. It is too much. I remain horrified.

 

Does anyone here have the stamina/capacity to put some of this into an email that any of us who would like to, could sign as "concerned members" of the forum.

I may be able to cc it to one of the Trustees.

Apparently, one of the Colleges complaints re the Guidelines is that EC is researching the Lightning Process, so appointing Findlay who used to recommend it is going to have the BPSers cheering!

 

This is the justification from CS being given on Facebook in response to questions about Findley's role in GET and CBT:

"As I have now said on several occasions Prof Findley is the only UK neurologist to sign the letter to NICE which calls for publication and implementation of the new NICE guideline on ME/CFS. The new guideline has abandoned the recommendation that people with ME/CFS should be treated with CBT and GET.
Dr CS MEA"

This attitude is appalling. "As I have now said on several occasions"? Is he impatient with the stories of patient harm?

I am sharing because this idea that we should be okay with someone who harmed patients in gratuitous, cruel ways being patron of the MEA just because nobody else is around standing up for us - and dragging out his "neurologist" credentials again - is a classic abuse pattern. Nobody else will help you!

You see the same in the positive stories about Findley. Everyone else is so appalling to ME patients that him saying "I believe you" etc is such a relief that people think he's wonderful in contrast to everyone else. You can do anything after that.

I am sorry that this is poorly expressed, I am not feeling great. xx

 

Thank-you @Trish - to be honest seeing the replies from the MEA has really compounded the trauma.

I really suggest they sort out their communications and don't treat patients - and people relaying stories of abuse - like this.
It is like a parody of how an organization should behave.

 

Case of leopard ( or canny wolf) changing his spots?