Cognitive behavioural therapy for adults with dissociative seizures (CODES): a ... multicentre, randomised controlled trial (2020) Goldstein, Chalder

Trial by Error by David Tuller: CODES Trial Commentary Promotes "Eminence-Based Medicine"

By all accounts, the recently published CODES trial was the most authoritative study to date of whether cognitive behavior therapy (CBT) was an effective treatment for so-called dissociative seizures–a point confirmed in a commentary accompanying the paper in Lancet Psychiatry. Unfortunately, the CODES investigators and the commentary author seem to interpret the null results for the primary outcome as a call to find other assessment measures—not as a reason to seriously question the therapeutic intervention and its theoretical foundation.

Also includes parts of the letter psychologist and forum member @Joan Crawford wrote to Lancet Psychiatry as comment to Perez' response.

 

Trial by Error by David Tuller: My Letter to Author of CODES Commentary

Earlier today, I sent the following letter to Dr David Perez, a neurologist and psychiatrist at Massachusetts General Hospital in Boston. Dr Perez, an expert on functional neurological disorders, wrote a commentary for Lancet Psychiatry that accompanied the publication of the results for CODES, a major study of cognitive behavior therapy as a treatment for dissociative seizures.

 

I will be forever adopting Coyne's term here: experimercial. An experiment built for the sole reason of selling something with complete disregard for whether it works at all, it is assumed to work and therefore worth selling.

It's boom time! Boom time for quackery. Boom time for quacks. Major bust time for millions of victims of this death and suffering machine.

 

I've not watched this, but there's a new Chalder interview on CODES here:

https://www.youtube.com/watch?v=1__WnraaEYY

 

11.07 talks about the PRINCE trial

FND

CODEs is from 15.00 on
results from 18:00 (ish)

around 19:30 interviewer starts going into Freud, hysteria,conversion disorders

24:00
Fatigue

25:00 the pandemic and CBT

26:00 current big projects

 

Hm. this all makes me think it might be time to watch that great movie again, The Grifters.

https://www.imdb.com/title/tt0099703/

 

Not that meta reviews are of much reliability given GIGO, but this is definitely a blow to the BPS brigade. Maybe people are getting a bit weary of having to defend quackery that doesn't work. That will be the day.

Whatever "dissociative disorders" means, if anything substantial. But this includes conversion disorder, so essentially FND is not a thing. I doubt this will change anyone's practice, it will likely just be filtered out as inconvenient.


Psychosocial interventions for conversion and dissociative disorders in adults

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD005331.pub3/full

Can't confirm if CODES is included, the substance is locked.

 

This is a big blow to them. CODES does not seem to be included and would make the findings even worse.

 

There's exactly as much negotiation and choice as there is choice in those books where you are the hero, or in video games where you have to press a button to make a predetermined choice.

Or as choices go:

 

https://www.cochranelibrary.com/cds...8.CD005331.pub3/references#CD005331-sec2-0020

eta: see also
"
Ongoing studies
We found seven ongoing studies. Some had very clear and updated information on the study in the ClinicalTrials Register, in which case we have given that information below, while other studies gave less clear information and were explored via personal communication with the principal investigators, in order to obtain all available data. The following projects are all RCTs, either in preliminary phases, still performing data collection, have not yet made their data available or have not yet published their results.

• Professor Laura Goldstein 2018 is heading a large research project in the UK (CODES), which has been described in various articles (Goldstein 2016; Goldstein 2017; Robinson 2017). Their data and publication is not yet ready (Goldstein 2018), but is likely to be relevant for future updates of this review.
  "
• https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD005331.pub3/full#CD005331-sec1-0005

 

don't know if this has been posted.
Dedicated CODES trial website

http://www.codestrial.org/

results
http://www.codestrial.org/results/4594241082
(with link to information leaflet for participants)

 

That is such crap. the secondary outcomes are pretty meaningless.

 

In the paper on participants experience of the trial they had this to conclude from their findings:

That seems to have little to do with CBT. I learned breathing techniques in high school when I took a theatre arts class. You can now find useful breathing technique information pretty much everywhere.

Also, I don't know if this question was addressed earlier but the funding for this is:

My bold because I don't know what that is.

 

Also, I tried to copy / paste the URL's to the various pages that flow from the link http://www.codestrial.org/

in order to preserve them on the internet archive. The system seemed to have accepted the link as downloaded to the archive but when I clicked the archived links it said that there was no such page archived. Doing this multiple times yielded no useful result.

Posted in case anyone has any useful insights.

 

Those are Trudie Chalder's and I assume Lynn Goldstein's initials. That means whatever that independent fund is, it relates only to the two of them.

 

Does anybody have any idea what they actually mean by psychogenic/functional/psychosomatic/"dissociative"/whatever seizures? The definition is extremely vague and given the people involved, I can't help but think that this is what they mean by that:

https://twitter.com/user/status/1286015866535055361


This is relatively common in ME, I've seen many videos of that. I have this thing, whatever it is. Feels more like a mix of adrenaline and hypothermia behavior, shaking to make energy (something I can vouch for as a frozen-ass Canadian). It's more annoying than "distressing" after you get used to it being regular, as long as it doesn't come with pre-syncope. It also happens with COVID, interestingly.

I tried looking for videos and can't find actual films of it, just psychs talking about it. And since the definition doesn't help I have no clue that they mean and anyway they're all deliberately vague pseudo-categories so maybe it means many things.

Is that it? Because then it would likely mostly be ME patients arbitrarily defined by one symptom or another. Kind of how CFS is defined as a "primary complaint of fatigue", which is nonsense since there rarely is a primary complaint, the patterns are far more important than any individual symptom. Same with IBS, considering how common it is with ME.

Anyone has any idea what they mean here? I doubt there is one common meaning, seeing as this is entirely opinion-based on superficial features, it's likely to have multiple meanings depending on who you talk to and at what time of day. But I think this here is what they mean.

 

Yep.

1) Exactly what do they mean by CBT? Is there a clear definition of exactly what was done and di we know if the therapists stuck to what they were supposed to do?

This matters - if it became more than CBT then this is mislead & I've seen this before with ME patients - a friend had a go at me for dissing directive CBT when she found it very helpful. When I got her to describe the therapy it turns out she was given advice on pacing. Not the same thing at all.

Without a strict definition & adherence to it, it's too easy to "game" the findings in favour of "something" called CBT. Then when millions are spent on barely trained therapists inflicting it on the patients the patients aren't getting the treatment they were supposed to, just a poor substitute by the same name.

2) Without objective measurements we don't know that patients didn't give the answers they thought they needed to to get whatever support they needed with benefits, employment etc. Or they simply said what they had to to get away from the therapist.