Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+

Abstract

The COgnitive behavioural therapy versus standardised medical care for adults with Dissociative non-Epileptic Seizures multicentre randomised controlled trial is the largest, fully-powered study to test the clinical and cost-effectiveness of a psychotherapeutic intervention in this population. We also explored predictors or moderators of outcomes and investigated mechanisms of change in therapy. In this current review of findings, we discuss issues related to the design of the trial and consider the study’s nested qualitative studies which were undertaken not only to shed light on the original research questions but to provide insights and recommendations for other researchers in the field of functional neurological disorder. Finally, we consider issues relating to the possible clinical application of our study findings.

Open access, https://neurologyopen.bmj.com/content/6/1/e000659

 

They're writing a paper... about having done a study? Which is already published? Which they recognize was not statistically significant? But still speculate that it could work?

But it failed, did not even reach statistical significance. And this reasoning is entirely circular, it doesn't confirm anything at all. "Perhaps" it "may be helpful" to just quit doing this nonsense.

But they have no issues claiming that their secondary subjective improvements are significant, even though they literally aren't. Those must be trusted. Reports of seizures? Who can really tell if they're real? Feeling better? Now that's real space age medicine!

What nonsense.

After claiming that their trial is "fully powered", they argue that it actually isn't:

They had been arguing for years about this primary outcome. They claim to have integrated patient input in the study, which agreed to this objective primary outcome. Even though they should have expected that it would be null. Probably confident that even if it were, they could just pull it off anyway, argue for whatever nonsense they feel like. Just like they're doing here.

Lessons learned:

Trial experts can do a trial, on time. Groundbreaking stuff.

They can even, with funding, get professionals to do something as instructed, which I guess comes as a surprise? It ended up being useless, so it's feasible to do something useless. As long as the money keeps flowing they'll pull off doing useless things.

What is the point of this paper?! All they do is basically narrate what they did, admit it didn't work, but they could do it, and it can be done again, therapists can consider applying the same concepts, or do whatever they feel like, it's all good.

Trial experts doing trials for the sake of doing trials and claiming that all they can do with it is do trials, on time. It's truly a wonder why biopsychosocial medicine has exactly zero breakthroughs to its name. But, hey, they can keep doing it as long as the money comes in and they can publish useless papers about useless studies.

 

There is an odd part in the paper that talks about how based on this, it may be better to try to make the seizures less bothersome, since they can't affect their frequency or severity, and it's framed as, ah I'll just quote it here:

So basically it's about avoiding embarrassment or bothering other people. Or whatever. They seem to think that having a seizure alone at home is not a problem at all. Wherever they pulled this idea, or that it's possible to use techniques to stall them I have no clue. I guess based on some noise about how there were as many seizures, but given the chaotic nature of random chance, there were some longer periods between episodes, which also means that there were shorter ones, and that's exactly what you expect out of randomness.

So basically I guess they're framing it as some fear of embarrassment at bothering people. Or whatever. I don't know. They're not even trying to make sense at all, and clearly it doesn't matter anyway. Ridiculous people arguing total nonsense.

 

It’s much better to have a dissociative seizure alone at home, than in a workplace where others can summon medical attention. Obviously.
And given that you can delay seizures using techniques (including CBT to help you reframe them as “not that bad”) basically anyone having one at work is a lazy time wasting attention seeker. Maybe. Or not. Someone should look into it (again) to see if that’s true. We didn’t find that it was true, but it might be.
Seems like effort preference from the authors.

 

“Do it on you own time please!” ?

 

It sounds like to me what they are saying is, “Try not to have your seizures in front of people in case you find out they are actually real ones and witnesses can corroborate your story during litigation against us.”

 

As if drilling people to think they should avoid it and be embarrassed by it actually helps reduce it rather than adding psychological harm to the experience too

all very strange

 

https://twitter.com/user/status/1798755878872780985


People on twitter pointing out that it was a negative trial, to which Stone replies with postmodernist nonsense about how it doesn't matter how many FND seizures you have, it's about how you feel about having them. Of course he would argue in favour of wooly outcomes like feelings since the hard outcomes are always negative in such CBT trials.

 

i hadn't seen this yet. They've spent several years trying to spin that failure as a success. I've already written a batch of posts about it when it first came out. After the failure of the primary outcome, they came up with all sorts of reasons why the primary outcome--reduction of seizures--was not the correct one. Robert Howard has blocked me, but he's a total conversion disorder guy who disagrees with the "brain network" theory. Though he of course has no more evidence for his ideas than Stone does, his objections to Stone's efforts are reasonable--like, the trial failed, dude.

 

And a response on the thread from Stoyan Popkirov ( neurologist interested in disassociate seizures and FND )
Cue different funders. ....

I think it's a key detail that funders dictated the choice of primary outcome - the trialists were all well aware of existing studies showing that HR-QoL doesn't vary with seizure frequency. So in this case I understand the hesitation to file under "failed".

 

All of their behaviour starts to make sense when you realise that the primary objective of such research is to reduce healthcare utilisation, not to eliminate the symptoms (which is currently not possible). The goal of treatment is to convince the patient that nothing is seriously wrong and to stop presenting to the emergency room/bothering the GP.

 

Can someone post the full thread? I am blocked by both Howard and Popkirov and having to sign in and out of different X accounts to see them is a chore.

 

https://twitter.com/user/status/1798744674674651375

 

https://twitter.com/user/status/1798769459710316657

 

Also on thread
https://twitter.com/user/status/1798790381917888886


Jon I thought the study reenforced what we see in practice when a patient with FND has been well supported from diagnosis. If the symptoms do not resolve, living well despite the symptoms is a gift to so many and that for me was the positive outcome of the CODES trial. Well done

 

Just seen this. Will try and read later this week.

I had a letter to the editor rejected re CODES as the journal was focusing on Covid-19.

Perhaps I can look at what I wrote and re write.

CODES was a failure.

Spinning it as anything else might backfire for Stone et al and ensure more critical voices speaking out.

Patients want to not have seizures and other related symptoms. Anything else is window dressing and tinkering.

 

Odd seeing Howard making a good point. First time I've seen him not being wrong. Broken clock, perhaps? It's this whole double standard that sinks everything, it is true that any drug trial would be considered a failure here, but psycho woowoo gets a complete pass because otherwise it would never show any of that "promise" of a "trend", or whatever.

But the choice of the primary outcome of # of seizures was made because it is what matters most to patients, and this is what most patients would report. In fact how much it bothers them is basically a proxy value for the same, as fewer seizures would obviously be better. It's all written down, the researchers made it clear before the trial that this was the only relevant outcome, then afterward pretended that it wasn't because the outcome failed. Stone is simply justifying that failure means success because nothing matters in psychosomatic ideology.

Anyone has the energy to follow the CODES researchers explaining it and pointing it out? I'm really not in shape to do this right now. @dave30th, maybe?