Functional Neurological Disorders: Challenging the Mainstream Agnostic Causative Position 2024 Scamvougeras and Castle

[Jonathan Edwards]

And does that perhaps explain in part why so many of the proponents are utterly convinced the therapies work?

I don't think we need to suggest that therapies actually work to explain why proponents are utterly convinced they do. All health care professionals are utterly convinced what they do works simply because they never make any controlled observations and patients are polite. Until very recently (about 50 years ago) 90% of medical procedures didn't really work but everyone was totally convinced they did. Therapy was built in to human culture thousands of years before it did any good.

The PACE results are actually so poor that it is not really credible that even in an under-recruited subset that the treatments did much.

 

[Eleanor]

I don't think we need to suggest that therapies actually work to explain why proponents are utterly convinced they do. All health care professionals are utterly convinced what they do works simply because they never make any controlled observations and patients are polite. Until very recently (about 50 years ago) 90% of medical procedures didn't really work but everyone was totally convinced they did. Therapy was built in to human culture thousands of years before it did any good.

The PACE results are actually so poor that it is not really credible that even in an under-recruited subset that the treatments did much.

That reminded me of this: https://www.newscientist.com/article/dn17064-quack-remedies-spread-by-virtue-of-being-useless/

…bogus medical treatments spread precisely because they don’t work. That’s the counterintuitive finding of a mathematical model of medical quackery.

Ineffective treatments don’t cure an illness, so sufferers demonstrate them to more people than those who recovery quickly after taking real medicines.

 

[rvallee]

Some quotes:


It seems that Scamvougeras is doing what he attacks others of. Can this name be real? It seems to be.

It's really hard to be this wrong. I mean look at this. This is a truly impressive amount of being wrong, in all the wrong ways, too. There is not a single bit of positive evidence for this phenomenon, it's based entirely on absence of evidence, and yet this dude says, maybe even thinks, that they have evidence beyond all possible doubt. Amazing. Hubris rarely gets this pure. Even theoretical physicists working with the most tested scientific theories out there aren't half as confident as this about the finality of their knowledge.

That people like this are the main force being all the other concepts in psychosomatic ideology is what convinces me more than anything that there is no such thing. That in all cases, the fluctuating nature of those illnesses and random chance explain all the natural cases, while a combination of this and an excessive level of bias, more than is tolerated anywhere else, is what explains the small statistical blips in studies.

All of which really just keep confirming my views on intelligence, how it's largely a social phenomenon that works in a large population when people have all the ideas, and I mean really all of them, even the bad ones, especially the bad ones, and they weed themselves out naturally when good ideas work beyond what their creators can do, through technology. But here is a case where the natural pruning doesn't work, because it operates entirely in a zealous echo chamber with zero accountability, has been artificially propped up and so doesn't die a natural death, as bad ideas always eventually do.

Look at how weird this dude is. Is it pure ignorance? It's so hard to believe. He talks about "already hearing" about functional being bad, but the term has been around for over a century, and it's openly discussed, by people like him, as being ye olde conversion disorder, a dead-end of care and knowledge.

Maybe he thinks we're too stupid to read the research? Can't understand simple words? They're not even hiding it, here he plainly says it. Which is about as clever as a well-known bigot talking about all the alternative terms they use to mean the same as well-known slurs, but says out loud that it's their whole strategy like it's some clever thing. I mean it works in politics. I see it happen a lot and it's weird but it works in politics, about issues where people don't care whether it's true or not, where it's all feels and fut feeling.

Clearly, either people with terrible ideas and worse judgment gravitate towards psychosomatic beliefs, most likely in my opinion, or being trained in this requires to abandon all reason and basically only develop bad ideas and worse judgment over time. A lot of this is clearly about power. Maybe psychosomatics attracts people with a lust for control over other people. I don't know. Anyway it's beyond clear how none of this, nothing at all, is any valid. People like this are very reliable reverse seers, people who are so reliably wrong that you can take the opposite of everything they say to the bank, and it seems that in psychosomatics they even dominate the field, e.g. Sharpe and Wessely.

 

[JohnTheJack]

I don't think we need to suggest that therapies actually work to explain why proponents are utterly convinced they do. All health care professionals are utterly convinced what they do works simply because they never make any controlled observations and patients are polite. Until very recently (about 50 years ago) 90% of medical procedures didn't really work but everyone was totally convinced they did. Therapy was built in to human culture thousands of years before it did any good.

The PACE results are actually so poor that it is not really credible that even in an under-recruited subset that the treatments did much.

OK, but if we accept some patients may need to rationalize their improvement or decide they no longer want to malinger or have had enough of malingering for now or actually quite liked the chat and think they'd rather like to get on with things a bit more now or whatever, then that would still convince the therapists that their intervention works.

I'm not actually saying it does, just that it's possible that the proponents were seeing this type of patient in their clinics and these patients improved on subjective measures and so they convinced themselves that they had an effective therapy, which even in poorly run trials was shown not to make any objective difference to patients with more strictly defined ME.

It is all perhaps just as much about the therapist saving face as the patient.

ETA: last sentence

 

[ME/CFS Skeptic]

I'm not actually saying it does, just that it's possible that the proponents were seeing this type of patient in their clinics and these patients improved on subjective measures and so they convinced themselves that they had an effective therapy, which even in poorly run trials was shown not to make any objective difference to patients with more strictly defined ME.

Interesting comments. But the proponents claim that it did work in strictly defined ME and in the PACE and all the other trials they set up. They see recovery in the exact same patients that failed to show any objective improvement in fitness or work capacity.

Also if you trace back where the whole GET/CBT rationale came from, it seems to have focused on strictly defined ME from the very start. It is not that they started with fatigued patients or FND-type patients and then expanded and captured ME as well. The whole fear avoidance theory was aimed at patients with ME.

 

[Jonathan Edwards]

I'm not actually saying it does, just that it's possible that the proponents were seeing this type of patient in their clinics and these patients improved on subjective measures and so they convinced themselves that they had an effective therapy

But where did the 'effective therapy' come from. The 1998 article by Chalder and Wessely (?David) describes the detail of how CBT for CFS should be done but at stage when it is not credible that they had evidence that the details made any difference. They made it up first and then got convinced it worked. To discover something works you have to have invented it first!

People have been recommending exercises for back pain for years but the only decent studies it makes no difference.

 

[Kitty]

But where did the 'effective therapy' come from...To discover something works you have to have invented it first!

I don't know. But it's not hard to envision a mindset that starts with deeply prejudiced assumptions (these people need to pull themselves together) and arrives at a course of standardised psychological therapy (we'll give them a formula for pulling themselves together) as a solution.

And if you invent something that's a cheap and easy solution for a significant healthcare problem, you've got an excellent way to earn academic kudos and keep yourself in gainful employment—you can keep tweaking it and running trials that show it works. By that point it doesn't matter one way or the other, only that you can convince the right people it works, meet your publication quota, and look forward to your pension.

 

[JohnTheJack]

Interesting comments. But the proponents claim that it did work in strictly defined ME and in the PACE and all the other trials they set up. They see recovery in the exact same patients that failed to show any objective improvement in fitness or work capacity.

Yes, but that's just noise from badly designed trials, the inevitable, small, subjective improvement in some patients that is going to occur using subjective measures in an unblinded trial.

Also if you trace back where the whole GET/CBT rationale came from, it seems to have focused on strictly defined ME from the very start. It is not that they started with fatigued patients or FND-type patients and then expanded and captured ME as well. The whole fear avoidance theory was aimed at patients with ME.

I'm not sure that's true. Wessely's one and only trial (direct to PDF) for instance used Oxford criteria and subjective assessments. They may have been saying that their trials were of 'CFS patients' as strictly defined, but the criteria they were using were basically feeling tired for 6 months.

 

[ME/CFS Skeptic]

I'm not sure that's true. Wessely's one and only trial (direct to PDF) for instance used Oxford criteria and subjective assessments. They may have been saying that their trials were of 'CFS patients' as strictly defined, but the criteria they were using were basically feeling tired for 6 months.

But in their earliest descriptions at the end of the 1980s they constantly refer to ME and mention exercise intolerance. Their main target was to challenge the advice of the ME associations that advocated pacing.

For example:
Postviral fatigue syndrome: time for a new approach - PMC (nih.gov)
Management of chronic (post-viral) fatigue syndrome - PubMed (nih.gov)

 

[JohnTheJack]

But in their earliest descriptions at the end of the 1980s they constantly refer to ME and mention exercise intolerance. Their main target was to challenge the advice of the ME associations that advocated pacing.

For example:
Postviral fatigue syndrome: time for a new approach - PMC (nih.gov)
Management of chronic (post-viral) fatigue syndrome - PubMed (nih.gov)

Yes, but this is part of the disconnect. They were seeing one group of patients convinced they were seeing another. And the giveaway is when they create the Oxford criteria. That must have come from the clinics. It must have been what they were using to diagnose patients with 'CFS'.

And right from the beginning they have always adopted the language of ME patients and ME organizations. They still do it today. Note how much they now refer to 'PEM' when 10 years ago they didn't.

 

[JohnTheJack]

I'm not actually saying it does, just that it's possible that the proponents were seeing this type of patient in their clinics and these patients improved on subjective measures and so they convinced themselves that they had an effective therapy, which even in poorly run trials was shown not to make any objective difference to patients with more strictly defined ME.

I think this is poorly worded and doesn't explain what I mean. I would say instead:

I'm not actually saying it does, just that it's possible that the proponents were seeing this type of patient in their clinics and these patients improved and so they convinced themselves that they had an effective therapy. But even in poorly run trials this intervention was shown not to make any objective difference to patients with more strictly defined ME, albeit some improved on subjective measures.

 

[Hutan]

A number of scam treatments like LP humiliate people in a most unpleasant way - the very opposite of 'psychological treatment' in fact.

And so too does CBT for ME/CFS, it has much the same components ('You are not a reliable interpreter of what you are feeling', 'You need to follow my instructions', 'You will only get better if you want to, and you put the work in', 'Your personality is the problem, and we can fix it'.) I haven't done group CBT designed to fix false illness beliefs, but I can imagine there is quite a lot of sharing about how one's previously faulty outlook on life and poor decisions have led one to one's current ill-health, a lot of commitment to being better people.

The bottom line though for me is that the conversion/FND bandwagon in reality almost certainly does much more harm than good simply because of incompetence and an obsession a significant proportion of the human race have for gratifying their own desire to be seen to be 'helping' other people.

I cannot reconcile that with your earlier view, Jonathan, that Fred or whoever was happy with his FND label and getting on unashamedly with his life, having beer with his mates in the pub. I mean, I agree with the view you have expressed in this thread, but I did not understand your earlier comment, which was along the lines of 'who are we to deny someone a label if it helps them'. I was puzzled why you were thinking that. As the author here seems to acknowledge, the smoke and mirrors of any new name for hysteria/conversion disorder doesn't last long, and when the smoke clears and Fred and his drinking mates realise his doctors think he has hysteria, he probably will suffer more than he has to.

I've never understood why Tourette's - which involves involuntary tics - is accepted as a neurological disorder with relatively little stigma these days while functional movement disorders, that seem to be rather similar, are treated so differently. Google Tourette's causes and you get:

The cause of Tourette syndrome is unknown, but theories include bacterial infection, abnormalities in the metabolism of brain chemicals and genetic factors.

A straightforward expression of a lack of knowledge, without blaming the person or the family. Psychological support is around coping with the illness.
Whereas, a functional movement disorder carries all the baggage of childhood trauma and the suggestion that you can cure yourself by thinking better. A major difference seems to be that young boys with tics are more likely to be diagnosed with Tourette's and women are more likely to be diagnosed with a functional tic disorder.

I continue to think that, until psychologists can show, in robust trials, that they can really cure people, no one should be getting a functional/conversion disorder/hysteria diagnosis. As far as I have seen, there is no good evidence that BPS treatments cure people. The downsides of diagnosing someone with 'it's all in your mind' are so many and so consequential, including suicide, that it is only ethical if there is a reasonable chance of a significant benefit from a treatment. Possibly, some people do have symptoms just because of their faulty thinking, but if you can't distinguish them from people who have symptoms caused by a physical illness, and if there's no credible evidence that you can cure them, surely the best thing to do is to say 'we don't know what's caused your illness or how to cure you' and help people cope.

Upthread, someone commented about all of these people claiming recovery after the Lightning Process or CBT. I wonder how many people there really are. The ones we hear from most often, and loudly, are the ones promoting the treatments, or the ones still in the post-course euphoria. That's a really small number. I think actually there may not be that many people who would actually consider themselves cured, and even less who are back to their pre-illness activity levels, if you went back to them a year or two later. Of those, some of them probably understand that they were trying five different therapies at the time they got better, and it might well have just been time that healed.

 

[Peter T]

A major difference seems to be that young boys with tics are more likely to be diagnosed with Tourette's and women are more likely to be diagnosed with a functional tic disorder.

And seeking support from an online community is seen as confirmation of the ‘functional’ or rather ‘dysfunctional’ nature of the condition and a source of social contagion, just as the BPSers see groups like this as preventing recovery in ME/CFS. How can the beneficent cure use if we don’t rely sole on them for the truth, if we wilfully interact with people questioning their unevidenced orthodoxy?

 

[FMMM1]

The whole fear avoidance theory was aimed at patients with ME.

I think these folks will sell their model for anything --- they've expanded into Long COVID?
To be "fair" @Jonathan Edwards has pointed out that physios want to take over the world & he demonstrates a well founded scepticism of many medical professionals (including a number of his former colleagues!)!
Caveat emptor -- or rather those who commission public services (paid for out of public money - AKA tax) should apply that principle!
Then we have MEA awarding £90K to assess outcomes of clinical interventions i.e. subjectively (questionnaires)* - the whole area seems a quagmire of:

• "medical professionals" who seem to be incompetent and/or self serving; &
• a failure of the public bodies to assess interventions;

---- EDIT deleted "ably assisted by (incompetent) charity sector bodies!" - substitute "compounded by some very poor decision making by charities". Thanks to @Peter Trewhitt for his response

*"ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services" - https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-41#post-533452

 

[Peter T]

ably assisted by (incompetent) charity sector bodies

The MEA and Charles Shepherd deserve some defence. They have been active in service of people with ME for quite some time and have played an important role in for example getting an objective review of the evidence as part of the current NICE guidelines. Certainly one can not question Charles Shepherd’s hard work and personal commitment.

Not everyone will agree with everything they do, and they have been much less confrontational at times than many people would like. However they would argue that working with the establishment achieves more than working against it. Overall I don’t know that we can say this wasn’t a good policy. I don’t know their rational for funding this current project, whether they see working with BACME members as a way of influencing what is the current UK clinical establishment or if they see this as a way of supporting implementing the NICE guidelines, though I do share the reservations of others here about the direction of this project.

The MEA trustees along with Charles Shepherd have been in position for a long time, and perhaps many of us here in the UK could be more involved in the organisation. I include myself in that, as my membership lapsed some twenty years ago during a prolonged relapse, and I have not got round to renewing it since.

 

[rvallee]

"I suppose we could study individuals with FND who are not anxious or depressed... but they are hard to find." Exactly. Emotional distress is at the core of these disorders. Let's face that, and its implications, and help everybody else face that, too.

Again with the arbitrary assigning of causal direction, when the truth is that he and his like-minded colleagues really have no idea. The more certain people like this are, the more likely it is that they are wrong. They are just covering their ignorance with their own form of extreme denial.

Emotional distress would be a completely expected feature of any undiagnosed or misdiagnosed serious physical illness that is not being treated, or is being actively mistreated, including its existence being denied, and in a pretty nasty destructive way, as cited above.

Real mystery why people might be depressed and anxious, not to mention very pissed off, in those circumstances, isn't it.

Even worse, it's an expected, and found, feature of all illnesses. So this makes it especially foolish, because they make this arbitrary distinction based on their own perspective, on their own ignorance, rather than what is happening to the patients. Then they have the hubris of making 'teaching' the patients all about it one of their main treatment model. A thing they could not possibly misunderstand any worse. Egocentric misdiagnosis, in a nutshell.

But even then there's a lot of people who don't meet any definition of depression and anxiety, but would still get labeled because of overlapping questions, which is yet another level of foolish nonsense.

Good place for this quote I saw today and couldn't find where else to post:

None of our beliefs are quite true... In science, men’s attitude is tentative and full of doubt. In religion and politics, on the contrary, everybody considers it de rigueur to have a dogmatic opinion.

I guess we must specify "in religion, medicine and politics", because it's definitely true.

 

[rvallee]

I don't think we need to suggest that therapies actually work to explain why proponents are utterly convinced they do. All health care professionals are utterly convinced what they do works simply because they never make any controlled observations and patients are polite. Until very recently (about 50 years ago) 90% of medical procedures didn't really work but everyone was totally convinced they did. Therapy was built in to human culture thousands of years before it did any good.

The PACE results are actually so poor that it is not really credible that even in an under-recruited subset that the treatments did much.

There's also an inherent problem with evaluating outcomes, a problem that simply can't be resolved. It's basically the equivalent of a resolution problem, which makes differences impossible to distinguish. Like the faces on Mars. With a low resolution telescope, it looked like faces. With the right resolution, it's just shadows on tiny hills.

I've been having digestive issues for a long time, mostly GERD, and have good and bad days/weeks. Recently I started taking a PPI and it's made a significant change. I also keep track of everything I eat, food and supplements/medication, as well as ratings for some symptoms, like acid reflux and abdominal pain.

And even though I have improved since taking the PPIs, looking at my spreadsheet, it would be impossible to notice where I began taking them (other than a note that says so). A few weeks before that, I had a few especially bad days, probably as a result of a few beers on mothers' day, then it improved over some days. A few days after that I began taking the PPIs, and improved a bit further. But the difference is small enough that I can't really put more than a slight decrease on my ratings, and it still fluctuates a bit. It's still noticeable, but it's small. The inherent problem.

What the hell is even the difference between a 4 or a 5 on a 10 point symptom scale? Why not more of a 5.5? Or even a 6? It's not based on anything, it's a wild ass guess for the most part, about right there with estimating how many balls are in a jar when there are hundreds. Except this one has a real, accurate, answer. Symptoms ratings don't have that. There is a natural memory purge of how the worst days are, how bad it can get, and it becomes easy to forget what's normal when you haven't experienced it in years. Then you add brain fog and the blurriness of living nearly identical days. So this is more about some inherent resolution limit, like the wavelength of light, it's not possible to just scale it further.

I'm sure there is a right way to evaluate all of this. Medicine hasn't found it yet. I don't think it can, not on its own, not with its usual ways. There's something too important missing: lived experience. I notice that medicine tends to use patient input the same way historians use sources: as a dead, passive thing you can't interact with. This is probably a big reason, it's missing leveraging the fact that we are intelligent beings for the most part.

 

[rvallee]

People have been recommending exercises for back pain for years but the only decent studies it makes no difference.

Speaking of: https://www.s4me.info/threads/gordo...-victim-blaming-approach-to-disability.38751/

 

[rvallee]

Upthread, someone commented about all of these people claiming recovery after the Lightning Process or CBT. I wonder how many people there really are. The ones we hear from most often, and loudly, are the ones promoting the treatments, or the ones still in the post-course euphoria. That's a really small number. I think actually there may not be that many people who would actually consider themselves cured, and even less who are back to their pre-illness activity levels, if you went back to them a year or two later. Of those, some of them probably understand that they were trying five different therapies at the time they got better, and it might well have just been time that healed.

I think we do have some indication of that. IIRC it was something like over 5K people who undertook the LP in Norway, and RecoveryNorway has something like... 50 testimonials? Most anonymous, some of whom are copies of others. So not even that many.

That is about the most giant red flag ever. You can't be more obvious pseudoscience than this, I actually think that most other forms of alternative medicine can boast of better results than this. But medicine has decided that the illnesses aren't real, so that 0.1% is basically the same as 100% safe and effective, which is the real problem here. They accept complete absurdity, because it's the only outcome of accepting absurd premises.

 

[rvallee]

One thing I notice from this is that for decades the whole game has been about finding ways to better fool the patients, to get them to sign a contract when they don't accept the terms, and it's all openly revealed in their own literature. Including the preference of 'functional' as sounding legitimate, so better at fooling people, while they all know what it really means. Even though it barely fools anyone. I guess it just makes them sleep better at night over it.

But now you have this slowly growing movement towards dropping the old dog whistles and just plainly say the quiet part loud. I mostly wonder what the people who spent decades carefully crafting their misdirection model think of an approach that basically ignores all of it and reveals the whole scam. Not that it was really ever subtle, the papers are available for anyone to read and they're very explicit about intending to lie and mislead the patients.

I guess they're going to blame tiktok and social media. That seems to be a fan favorite.