United Kingdom: Sheffield ME & Fibromyalgia Group News

It does not sound to me as though Diane O'Leary has taken on board any of the concerns that were raised in the thread discussing her BMJ Rapid Responses.

 

Ditto the impact of the IOM Report outside the U.S.
Ditto the change of order of "CFS/ME" to "ME/CFS" - which is not going to free up "CFS" to enable the term to be handed over to the psychs or for the "CFS" term to now be repurposed and used for "deconditioning due to psych issues" in Long Covid patients.

Where does she get these ideas from? I doubt it's from engaging with patients, themselves. And why does she fail to run these ideas past patients before sticking them up on Rapid Responses?

 

She has, herself, upset and alienated a number of Twitter users who have been assigned an FND dx and also some FND patient group leaders.

 

I have not listened to this but FND is not the new name for MUS or anything like it. Historically, FND is a relatively small category that includes non-epileptic seizure and movement disorders that has been around, and separate from other things, under various names for decades.

I get the impression that Dr O'Leary, as a philosopher, would do well to remember Frege's distinction between Sinn and Bedeutung. Sinn is the idea of something out there and bedeutung is what is actually out there. Non-philosophers tend not to confuse the two but philosophers, who go on about the difference, seem to muddle them up! Her CFS is the sinn of the BPS. ME is the bedeutung.

 

She's mistaken; the development and peak popularity of psychosomatic medicine obviously predates this. I have in front of me a British medical text ca. 1950 that attributes some level of psychosomatic causation to peptic ulcer, "spastic and mucous colitis", chronic constipation and diarrhoea, hypertension, coronary disease, headache, asthma, diabetes, various skin conditions, hyperthyroidism, rheumatoid arthritis and yes - "neurasthenia" too.

If she equates FND and MUS, that is also in error. FND is the latest euphemism for what used to be called hysterical conversion - pseudoseizure, pseudoparalysis and function loss of different kinds such as "hysterical blindness" or limb weaknesses, as well as various disorders of gait (classically a dragging, monoplegic form) that are usually reversible with distraction and not associated with any lesion. It is true, however, that Stone and Mark Edwards appear to have designs on expanding the category, especially to include RSD/CRPS, but that does not make the category synonymous with MUS.

Even Wessely, who undoubtedly looked very long and hard for any signs of "conversion disorder" in his chronically fatigued patients, was - as the pie chart on p83 of Psychological Disorders in General Medical Settings shows - only able to identify it in a mere 2% of those whom he diagnosed with "CFS", and that was doubtless a cohort chosen according to over-broad diagnostic criteria.

 

Do any influential people in the Forward ME group have these views?

 

Yes, it's why one of the PACE authors (Sharpe I think) argued vehemently that it was CFS they studied not ME.

 

If O'Leary wishes to make a difference, it would be more effective for her to align her message with that of the broader patient community.

 

This is an example of what I was thinking of, though I'm pretty sure he made the same assertion at other times also:

https://twitter.com/user/status/1009768534350663680

 

It seems as though the Countess of Mar is somewhat taken by her views.

 

This would require her to be open to consulting with, and listening to patients, carers and advocates and a willingness to assimilate patient experience and knowledge - as opposed to presenting her beliefs and ideas in presentations and briefing papers that appear to have been prepared in isolation.

She's said on Twitter that she's looking forward to reviewing insights from the group [Sheffield ME & Fibromyalgia] in the [presentation] recording and that there were "some terrific questions that helped to clarify a productive path forward".

A "productive path forward" for whom?

A number of us spent considerable time and energy setting out in the BMJ Greenhalg Long Covid management article/Rapid Responses thread the flaws in her pitch for handing "CFS" to the psychs and that the term "CFS" could then be repurposed for Long Covid patients and others with (verbatim quote) "a psychiatric condition that sometimes develops in reaction to acute viral infection.[2] [3] [4] It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs."

Has she returned to that thread and addressed these concerns? No. They are left hanging.

Diane O'Leary should be experienced in advocating for patient groups. She lives in the U.S. and has written in U.S. media about how she was initially misdiagnosed with CFS then eventually correctly diagnosed with Sneddon syndrome (a rare, genetic, progressive condition that affects blood vessels). For some years, she collaborated with rare disease organisations and she also ran a patient org for people with Sneddon syndrome.

But her advocacy style seems to be:

a) This is how I see it.
b) This is what must be done to achieve my objectives.
c) I don't understand why you patients wouldn't want this, too.

That is not advocacy.


[Edited to insert verbatim quote.]

 

I believe in true ME / real ME but I don't think CFS is fake nor do I think it is psychosomatic. I think the confusion harms those with ME.

 

That is a valid position to take.

 

Do we know whether it was the real or the imaginary Diane O'Leary who gave the talk?

 

This talk is now available on YouTube

Code:

https://youtu.be/VtHkH1c8P8E

https://www.youtube.com/watch?v=VtHkH1c8P8E

 

I thought it was pretty good. Still not at all sold on the possibility of a true subset of conversion disorder / FND given the track record, it's not worth entertaining specific parts of a delusion given the error rate here is far above 90%. Especially with long covid showing how massive the number of people are who take months to recover. It's basically guaranteed that the vast majority of the "success" of such behavioral programs is exactly the same mechanism as how sleeping with a healing crystal under one's pillow cures the common cold, by the mere act of being there while it happened, playing no role whatsoever other than taking credit for the few successes, while ignoring the vastly larger set of failures.

It really shows how fringe this school of thought is, though. Inexplicable that it ever got this much influence with nothing but the same old stale hot air.

 

I Believe?
Is this a valid position to take?

 

@10:30 She claims BPS is a more human approach but in my experience (as it's practised with severe ME) it's inhumane. I was sectioned and told that I wasn't in any pain, they made my condition permanently worse yet denied this. I've had to endure years of disability denial from family and carers and it continues to this day.

Why wouldn't it be valid? I believe in a narrower definition of ME, that it is an adverse reaction to exercise or exertion. I think bundling people with idiopathic fatigue in with real ME patients is counter-productive. It leads to flawed research that shapes medical and public opinion in harmful ways.