United Kingdom: ME Association news

"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

 

Interview is on YouTube

https://www.youtube.com/watch?v=9YX3wFkDlhI

 

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.

 

This is very concerning. From what I’m seeing here and some awful testimonies what is MEA thinking?

 

I emailed MEA to withdraw my direct debit only to find my membership had expired on 1st September even though I've continued to receive emails and publications.
I have written to say I will not be renewing.

 

not a surprise there is a history of the bps believers infiltrating me charities for their own propaganda and disinformation purposes . the trusting nature of many is always abused by the few .

 

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!

 

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