United Kingdom: ME Association governance issues

Anyone who takes an idealogical approach to medicine which depends upon ignoring and denigrating patients, and doesn't pause to reflect that their professional life now consists of being rude and abusive to those patients on a daily basis, has no place in medicine, let alone a patient support organisation.

The BPS approach, LP, GET, all of this quackery only "works" if the patients voice is completely ignored, not only by the doctor, but the treatments also consist of brainwashing the patients to ignore themselves. And if they don't, they are responsible for their own condition, and the doctor can wash their hands of them, or in the case of particularly manipulative and vindictive doctors, diagnose children with "pervasive refusal syndrome", even though it is purportedly every patient's right to refuse treatment. And those who dare to refuse treatment on a child's behalf are threatened with having their kids removed in secret proceedings or diagnosed with Munchhausen's by Proxy or whatever the flavour of the month is.

We have got so used to all this crap that we sometimes forget how completely sick it is. Any decent human being hearing about such a system could only react in horror, revulsion and disbelief. It's the disbelief that's the problem, just trying to inform someone makes you sound like a paranoid nutter, which by sheer coincidence ties in nicely with the militant patient activist narrative which has been carefully crafted and publicised by those same doctors who are supposed to be and claim to be supporting us.

And now one of the most patronising examples is being officially invited to be our patron? Has the MEA lost sight of how completely sick the whole system is?
 
Trish said:
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.
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How quickly the habit of ignoring patients' voices spreads, once you invite people into your organisation who have always behaved that way.
 
TiredSam said:
The BPS approach, LP, GET, all of this quackery only "works" if the patients voice is completely ignored, not only by the doctor, but the treatments also consist of brainwashing the patients to ignore themselves. And if they don't, they are responsible for their own condition, and the doctor can wash their hands of them, or in the case of particularly manipulative and vindictive doctors, diagnose children with "pervasive refusal syndrome", even though it is purportedly every patient's right to refuse treatment. And those who dare to refuse treatment on a child's behalf are threatened with having their kids removed in secret proceedings or diagnosed with Munchhausen's by Proxy or whatever the flavour of the month is.

We have got so used to all this crap that we sometimes forget how completely sick it is. Any decent human being hearing about such a system could only react in horror, revulsion and disbelief. It's the disbelief that's the problem, just trying to inform someone makes you sound like a paranoid nutter, which by sheer coincidence ties in nicely with the militant patient activist narrative which has been carefully crafted and publicised by those same doctors who are supposed to be and claim to be supporting us.
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What a succinct summary of how we are completely stitched up.
Would you mind if i printed that off & used it personally @TiredSam ? Its just a good aide memoire of the situation - was trying to explain to new carer recently & got lost in the details.

No prob if you not comfortable with that of course
 
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Trish said:
I am shocked. Does anyone know how patrons of the MEA are selected?
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I don't know, but I would imagine this was a Board of Trustees' decision.

Thing is, the ME Association is a membership org. The BoT exists only to serve the memberships' best interests.

Why was this not put out for membership consultation?

In the past, the MEA has held membership postal votes for diverse topics such as whether the name of the organisation should be changed to the Myalgic Encephalopathy Association; whether the MEA should adopt the Canadian Criteria; and whether certain clauses in the Association's Mem & Arts should be redrafted in order that the Board can filter out any nominees for standing in Trustee elections that they don't fancy as potential Board members and that before an individual can have their name put forward for Trustee elections, they must first be accepted as a member of the Association (whereas prior to this change, individuals did not need to become members before being voted onto the Board but were expected to become members after successful election).

Were I a member of the MEA, I would have wanted to have been consulted.
 
‘It was professor Findlay who told me not to join any charity groups or attend any support groups or look up my illness on the internet!!!!! Why would he want to be a patron?’
The above was posted on the ME Association thread on Twitter. It seems to sum the situation up perfectly.
The arrogance of the response by the MEA on the Facebook page is appalling. They are simply ignoring the heartfelt pleas of the most vulnerable amongst us, patients who have paid for them to represent our best interests.
 
Ariel said:
"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"
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That's a reflection of how dysfunctional the system is, there is no need to grovel to the few people who aren't 100% wrong. There is no middle ground between reality and delusion, either we stick to reality or nothing matters.
 
More from Findley:

https://www.bbc.co.uk/radio4/youandyours/transcripts_2007_31_mon_02.shtml

You and Yours - Transcript
BBC Radio 4

TX: 30.07.07 – ME: The Lightning Process

PRESENTER: PETER WHITE

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.
-----------------------

Note that the presenter is Peter White, a BBC presenter and journalist.

(...)

FINDLEY
Well there are many things in medicine we don't know why they work but we still use them. The fact is that we're just doing pilot studies, we're at the very beginning of exploring this form of treatment. But this is one of many treatments. People with chronic fatigue syndrome, ME, are manageable, they can be treated and what you do is look for the symptoms which are perpetuating that illness. It may be pain, it may be sleep disturbances, it may be auto-psychological states, it may be allergies. Now on a 10 minute programme it's impossible to go through every single treatment which is used for individuals because this is a huge area of medical dysfunction. But you treat that person as an individual, looking for the factors which are perpetuating in there.

(...)
 
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Dx Revision Watch said:
ME Association
As you may have seen, Professor Findley has also added his signature to a letter to Professor Gillian Long, CEO at NICE, calling for the implementation of these new (non) recommendations regarding CBT, GET and the Lightning Process. Dr CS MEA
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I am afraid I have also lost confidence in Dr Shepherd. He has made a number of dismissive comments in the face of descriptions of abusive behaviour from traumatized patients. He also makes this signature from Findley sound like a magnanimous gesture, whereas it's the bare minimum from someone who has nominally devoted his career to - and likely made a huge profit from - ME patients.

(It's for this latter reason that I was non plussed by the decision to defend Findley by citing the help he gave to insurance claimants. He had an interest in doing so - in fact when I went to see him we paid out of pocket as the insurance company that my mother was covered by (I was under 26) denied the claim. Insurance companies covering ME/CFS were important to his private practice, so it was a bizarre thing to trot out as though he were a disability rights campaigner and fighting for a principle.)
 
Simply awful. Am I paranoid or does it seems like a disguised attempt to infiltrate an ME organization, in order to confuse, divide and weaken the ME community ...?

Either way, the fact that Findley signed a letter endorsing Nice's new guidelines does not excuse his arrogance, unprofessional and cruel behavior towards patients. Revolting.
 
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"Nov 2008 BBC Radio 4 broadcast an important
series of programmes which looked at different
aspects of M.E., from why it is such a controversial
illness to what treatments are available and the
current state of research.

"ALTERNATIVE TREATMENTS
On 8 November, You and yours looked at some of the
alternative treatments on offer for M.E. with Action
for M.E.'s principal medical adviser, Professor
Anthony Pinching, academic researcher and
homeopath, Dr Elaine Weatherley-Jones, neurologist,
Professor Leslie Findley, former GP David Mickel
and GP and homeopath Dr Susie Rockwell. "

p23
http://www.mesupportgroup.co.uk/Newsletter Summer 08.pdf
 
2009-03-26
Professor Leslie J. Findley at the Essex Neurosciences Unit at Queen's Hospital in the UK has developed and is leading a nationwide offering for people with severe degree of ME / chronic fatigue syndrome.

Multidisciplinary
Findley places great emphasis on the fact that ME is not one condition - and that treatment must therefore be individualized. The program at the hospital's specialist unit is multidisciplinary and involves interdisciplinary teams. - ME is a common term for a number of different conditions, each of which can be treated by evidence-based methods, Findley believes.

- The basic ailments vary from person to person and can include, among others, cognitive problems, mood disorders, sleep problems, allergies, gastrointestinal problems or pain. Therefore, one type of treatment will not suit everyone, Findley emphasizes to Dagens Medisin.

Mapping the underlying
According to Findley, three to four doctors at the hospital in Essex have received thorough training in ME diagnosis and treatment. Doctors have different professional backgrounds in immunology, neurology and psychiatry.

- If Norwegian doctors want to come here, they are welcome. Alternatively, we can send an interdisciplinary team to Norway to conduct a two-day course for doctors, says Findley.

The professor of neurology once again points out the importance of individual treatment as well as finding out the underlying condition of each individual patient.

- As there are different types of ME, for example, psychological approaches will have a better effect for some. It is absolutely essential to ask what is it that maintains the ailments. Why is the person tired? Is it social conditions or work-related factors? Why do symptoms of stress or depression persist? The answers must form the basis for the choice of treatment, Findley comments.

Funds for study visits
Department director Cecilie Daae at the Department of Hospital Services in the Norwegian Directorate of Health is responsible for the national competence network for diagnosis and treatment of CFS / ME.

- The Norwegian Directorate of Health issued a report on CFS / ME exactly two years ago. Among other things, the scheme at Queen's Hospital is discussed here. Some of these elements are now included in the treatment of patients in Norway as well, says Daae.

She says that the Norwegian Directorate of Health has given grants to Health South-East to find out more about treatment schemes abroad. - Queen's Hospital has been discussed as relevant for a study visit, says Daae.
Unnecessary for the majority

- LP has a place. But the treatment plan is not suitable for everyone, and it is unnecessary for the majority of ME patients, says professor, neurologist and ME expert Leslie Findley.

About five years ago, he conducted a study of participants in Phil Parker's training program LP.

The approximately 50 participants were followed up at least six months after completing the course participation. About a third had a good response, just as many had some effect, while the rest did not benefit from it.

Not for the sick
Findley, who heads a unit at Queen's Hospital in England with its own treatment program for seriously ill ME patients, believes the sick are often not suitable for LP.

- We use similar techniques and other psychological methods as part of the treatment, but generally a broader methodological approach and individualized treatment, Findley says to Dagens Medisin.

A dead debate
In Norway, there has been debate about the extent to which ME is to be regarded as a mental or physiological disorder.

- The World Health Organization has long classified ME as a neurological disorder. The condition includes various disorders that affect the central nervous system and affect the immune system. Of course, there are psychological elements to the condition, but that does not mean that ME is a mental disorder. There is hardly anyone who will deny that Parkinson's disease is a neurological disease, although very many have serious mental disorders such as severe anxiety and depression, says professor and ME expert Leslie J. Findley.

- This is not a useful debate. Here in the UK, this debate today is virtually dead.
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https://www-dagensmedisin-no.transl...l=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=nui,sc
 
Lilas said:
Good God ! It is exactly the gibberish defended by the Royal Colleges ... and he integrates the Me Association ? Dangerous. It really seems to me that someone should pass this on to CS.
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CS has been indifferent on social media and I hope someone can get through to him that he has made a mistake for quite a few reasons - wrong attitude both to patients and to the issues at hand.

What do the MEA hope to achieve here? I'm sure Findley is trying to achieve something. Why help him? How does it serve the interests of ME patients?

What do you have to believe about ME/CFS to think this is all reasonable and above board?
 
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