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.
 
Kalliope said:
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.
Click to expand...
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.
 
at the same time you might have a kind of avoidance or reduction in activities that's
associated with having somatic symptoms.
so in that way it's there are some
similarities but obviously the beliefs that people have
and their perceptions that might be blocking them from moving forward
they may be quite idiosyncratic.
.........
the devil is in the detail what kinds of
thoughts are really people having and
how are they influencing what they're
doing or not doing
um what is it that's stopping them from
living the life that they want to lead
and which they value.

oh what is it what is it
[Laughter]
Click to expand...
there are lots of ways of
standardizing psychotherapy so
whether it be cbt or another kind of
psychotherapy
first of all you would have you would
want it to be based on a theory
and hopefully the theory will drive the
um components of the intervention
which you can then evaluate properly in
a randomized controlled trial
and you can then see whether the
processes that you've been targeted
um have have been the active ingredients
through
mediation analysis but but largely you
would need to have a written
manual for the therapist and the patient
um you can have
good supervision for the for the
therapists who are providing
the therapy you would want to list in
order to really
assess whether therapy is doing what
it's supposed to what the therapist is
doing
what they're supposed to do is that you
would have to um
listen to listen to recordings of their
therapy obviously with the patient's
permission
and then you would be able to rate the
content of the therapy to see whether it
indeed is cbt and not psychoanalysis or
whatever
so there are a whole range of different
things that you can do
Click to expand...
11.07 talks about the PRINCE trial
the prince trial we were focusing
on people who have
a number of different somatic symptoms
so whether it be
fatigue or pain or bowel symptoms or
functional
um neurological symptoms and we were
really targeting
the trans diagnostic processes so the
things that people
having the time the processes that
people have in common
um and even though they could still um
alter the therapy a little bit if
depending on the needs of the individual
because obviously it's all based on the
individualized formulation of the
problem um it was targeting some common
processes.
Click to expand...
FND
yeah well i think in a nutshell people
are experiencing physical symptoms with no clear-cut organic pathology
but they do have something that's that's uh wrong with their functioning if that
makes sense so there may be some
physiological difficulties that that uh things are not going and
working in the way that um they should work
that are really producing or maintaining these um physical symptoms so there are
physiological mechanisms maintaining the symptoms
but there wouldn't be an organic pathology such as a an inflamed um organ that you
can um address specifically like you would um with with a very clearly defined uh
medical disease.
But these symptoms really affect people profoundly they make them the person the individual
very anxious because they don't know how to manage them that would probably be true
to say um that it doesn't really affect doesn't just affect the patient in that
way but it also can make health professionals quite anxious um
but it also um can lead to quite profound disability.
so people are not able to carry out the um their everyday lives in the way that
they would like to and so the symptoms can be very varied you know
seemingly quite simple symptoms ranging to quite complex ones where
people can't move or something like that.
But they are very very common and um i think it's probably true to say that
it's the second most common symptom that or problem and diagnosis
that the neurologists see in the neurology outpatient clinic
and of course these patients often get admitted too so
what's also um quite worrying is that these difficulties are given so little
attention in medical education and i think that does need to be
addressed given how common these symptoms are both in hospital
populations and in primary care um i think the patients have you know had
have had a disservice in the past because they they haven't and enough
investment hasn't gone into them
Click to expand...
CODEs is from 15.00 on
results from 18:00 (ish)

around 19:30 interviewer starts going into Freud, hysteria,conversion disorders
The term
somatic symptom disorder which i it's
very controversial but i really like it
i like it because the same model can be
applied irrespective of the cause of the
symptom
so whether you've got pain or fatigue
related to an inflammatory condition or
a functional
symptom then some of the mechanisms may
well be similar
in that the way in which we interpret
things the attention we give to the
symptoms
and the way in which we respond
behaviorally could be all important
in determining the outcome
Click to expand...
24:00
Fatigue

25:00 the pandemic and CBT
we did a trial where we compared
uh face-to-face and telephone treatment
and we found that there was no
different for chronic fatigue syndrome
um we've been delivering psychotherapy
within our service within the south
london and maudly nhs trust
over the telephone um sometimes via
teams you know a
platform such as this and patients have
said that they've
um found it just as helpful on the other
hand i think there will be some
individuals who prefer to see somebody
face to face in the same room
um but but largely speaking the results
seem to be pretty promising
Click to expand...
26:00 current big projects
 
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

Background: Conversion and dissociative disorders are conditions where people experience unusual neurological symptoms or changes in awareness or identity. However, symptoms and clinical signs cannot be explained by a neurological disease or other medical condition. Instead, a psychological stressor or trauma is often present. The symptoms are real and can cause significant distress or problems with functioning in everyday life for the people experiencing them.
Click to expand...
Objectives: To assess the beneficial and harmful effects of psychosocial interventions of conversion and dissociative disorders in adults.
Click to expand...
Authors' conclusions: The results of the meta-analysis and reporting of single studies suggest there is lack of evidence regarding the effects of any psychosocial intervention on conversion and dissociative disorders in adults. It is not possible to draw any conclusions about potential benefits or harms from the included studies.
Click to expand...

Can't confirm if CODES is included, the substance is locked.
 
TC keeps talking about "negociation" between the practitioner and the patient, trying to convince that it's a balanced relationship between them and that nothing is imposed on the patient.
I very much doubt that the rational behind the therapy can be "negociated".
 
Last edited:
Cheshire said:
TC keeps talking about "negociation" between the practitioner and the patient, trying to convince that it's a balanced relationship between them and that nothing is imposed on the patient.
I very much doubt that the rational behind the therapy can be "negociated".
Click to expand...
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:

kxsgufJI5_zKpc9M-F05niojL4LRxMydMG8CSPqIE1E.png
 
dave30th said:
CODES does not seem to be included
Click to expand...

Included studies
Seventeen studies met the inclusion criteria: Aamir 2012; Ataoglu 2003; Chen 2014; Dallocchio 2016; Drane 2016; Goldstein 2010; Hubschmid 2015; Jordbru 2014; Khattak 2006; LaFrance 2014; Moene 2002; Moene 2003; Mousavi 2008; Nielsen 2017; Pleizier 2017; Thompson 2013; Tolchin 2019. Each study is described in detail in the Characteristics of included studies table.
Click to expand...
Goldstein 2010 {published data only}
Goldstein LH, Chalder T, Chigwedere C, Khondoker MR, Moriarty J, Toone BK, et al. Cognitive-behavioral therapy for psychogenic nonepileptic seizures: a pilot RCT. Neurology 2010;74(24):1986-94. [DOI: 10.1212/WNL.0b013e3181e39658]
Goldstein LH, Chalder T, Chigwedere C, Moriarty J, Toone BK, Mellers JD. A randomised controlled trial of CBT and standard medical care in patients with dissociative (non-epileptic) seizures. Epilepsia 2009;11:221-2.
NCT00688727. Cognitive behavioural therapy in dissociative seizures. clinicaltrials.gov/ct2/show/NCT00688727 (first received 3 June 2008).
NCT02325544. Comparing different treatments in reducing dissociative seizure occurrence (CODES). clinicaltrials.gov/ct2/show/NCT02325544 (first received 25 December 2014).
Click to expand...
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.
 
Last edited:
don't know if this has been posted.
Dedicated CODES trial website

COgnitive Behavioural Therapy for Dissociative (Non-Epileptic) Seizures
A Randomised Controlled Trial

The CODES trial is a randomised controlled study looking at a treatment for Dissociative (Non-Epileptic) Seizures.

Dissociative Seizures are attacks that look like epilepsy, typically with a blackout. The person may have shaking movements or fall down and lie still. Dissociative Seizures are genuine, common and distressing for patients and those around them.

The CODES trial is testing whether a type of talking treatment, Cognitive Behavioural Therapy (CBT), helps patients with Dissociative Seizures.

The trial, funded by NIHR (National Institute of Health Research), is designed to find out whether CBT is worth having in addition to standardised medical care. It could be that it is, it might be that it isn't - that is what the trial is designed to find out.
Click to expand...
http://www.codestrial.org/

results
http://www.codestrial.org/results/4594241082
(with link to information leaflet for participants)
upload_2020-7-23_19-53-24.png
 
In the paper on participants experience of the trial they had this to conclude from their findings:

Participants in this study were a diverse, heterogeneous group of individuals. The findings show the feasibility and acceptability among people with DS of taking part in an RCT offering DS -specific CBT from therapists and specialist medical care from neurologists and psychiatrists. Participants in the CBT + SMC arm of the trial found breathing techniques and distraction to be very important in helping with seizure management and control. Positive change was not always a matter of becoming seizure-free but included finding ways of managing DS occurrence.
Click to expand...

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:

This paper describes independent research funded by the National Institute for Health Research (Health Technology Assessment programme, 12/26/01, COgnitive behavioral therapy vs standardized medical care for adults with Dissociative non-Epileptic Seizures: A multicenter randomized controlled trial (CODES)). This paper also describes independent research part-funded (LHG, TC) by the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre at the South Lon-don and Maudsley NHS Foundation Trust and King's College London. JS is supported by an NHS Scotland NHS Research Scotland (NRS) Career Fellowship and the CODES research team also acknowledges the financial support of NRS through the Edinburgh Clinical Research Facility. The CODES study benefitted from the support of the NIHR Sheffield Biomedical Research Centre (Translational Neuroscience). The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
Click to expand...

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.
 
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:



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.
 
dave30th said:
That is such crap. the secondary outcomes are pretty meaningless.
Click to expand...

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.
 
You must log in or register to reply here.
Back
Top Bottom