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

I have submitted the following rapid response to this paper this morning.

It is limited to 600 words so not bale to make all pints i wanted.

Journal requires payment for publication so I am not submitting as review/correspondence.

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The CBT model tested in the CODES trial1 proposes that non-epileptic dissociative seizures (DS) are a dissociative, disordered arousal/fear response (without accompanying subjective feelings of anxiety and panic) which are maintained by fear avoidance of having further DSs. ‘Panic without panic.’ This is based on CBT to overcome fear avoidance in anxiety/panic (PAs) and agoraphobia2 with some guidance on interruption and control techniques. This has been found to be ineffective in reducing the frequency of DS in the trial and previously in a pilot RCT3. By contrast, using a fear avoidance model and approach method to treat PAs/agoraphobia, via CBT, results in large overall positive effects4,5. The stark difference in outcomes suggests that the hypothesis that DS are maintained by fear avoidance is not tenable and should be set aside, along with other methods that have been tried without success, for example, anti-epileptic medication. Further, the rationale for basing the CODES trial on one case study and failed pilot should have alerted researchers to the poor conceptual model of understanding DS. Strikingly, reflection on the underlying model is absent from this review. If the fear avoidance model was correct, then this would be a common feature in largely all patients with DS.


When DS patients present with psychological co-morbidity it is important to treat these aspects with evidenced based approaches. This would account for the improvement in subjective outcome questionnaires (secondary measures). It is understandable that patients report feeling somewhat subjectively better after support, acknowledgement, commitment, investment and understanding. Patients will naturally wish to please their therapists (placebo). However, no claim can be legitimately made regarding causation or working model as based on the fear avoidance model for DS. The researchers’ reflection on the need for objective measures as outcomes in unblindable trials misses this vital point. This has been made to these researchers previously6. It is absent from Perez’s commentary7. It is unhelpful to understand DS under the rubric of mental health as there is no evidence that a treatment model based on mental health methods (DS-CBT) is effective. It would be useful if researchers encouraged a tone of humbleness in the face of uncertainty; taking an agnostic view of the underlying cause(s) which remain unknown. Otherwise, there is a risk of psychosocial harm as patients feel blamed for their condition and stigmatised further as they are unable to resolve their DS after DS-CBT. As psychotherapy is often the treatment of choice, it is likely harmful to impose non-evidence based and methodologically unsound tentative hypothesis on patients. Lack of harm from psychotherapy cannot be assumed. Moreover, patients wish for understanding and resolution of their symptoms, not management.


There is no reflection in the review regarding the unique nature of the CODES cohort. Many people who experience DS also experience epileptic seizures. Therefore, CODES participants are likely a unique subgroup. Generalisation of any outcome is likely to be limited.


It is important that the underlying mechanisms and more effective treatments of DS are sought as a matter of priority. Muddying the waters with ineffective psychosocial treatments, such as DS-CBT, will likely delay, via diversion of resources, the engagement of creative and curious scientific observation and discovery, which will one day elucidate the underlying mechanisms and lead to treatment resulting in recovery. This will result in reduced stigma, distress and improve patient well-being, which is sought by all. In the meantime, honesty with patients is vital regarding the limitations of knowledge and the evidence base. Good quality support (practical, social, psychological) that does not overreach the evidence base may be relevant for some patients in the meantime.


1 Goldstein LH, Robinson EJ, Mellers JDC, et al. Cognitive behavioural therapy for adults with dissociative seizures (CODES): a pragmatic, multicentre, randomised controlled trial. Lancet Psychiatry 2020; 7: 491–505.

2 Clark, D. M. A cognitive approach to panic. Behaviour Research and Therapy, 1986; 24, 461–470.

3 Goldstein LH, Chalder T, Chigwedere C, et al. Cognitive-behavioral therapy for psychogenic epileptic seizures: a pilot RCT. Neurology 2010;74:1986–94.

4 Cuijpers, P. et al. How effective are cognitive behavior therapies for major depression and anxiety disorders? A meta-analytic update of the evidence. World Psychiatry; 2016; 15(3): 245-258.

5 NICE. Generalised anxiety disorder and panic disorder in adults: management. Clinical guideline [CG113]. 2020.

6 Edwards, J. PACE team response shows a disregard for the principles of Science. Journal of Health Psychology; 2017; 22(9): 1155–58.

7 Perez DL. The CODES trial for dissociative seizures: a landmark study

and inflection point. Lancet Psychiatry 2020; 7: 464-65.

 

Great letter by Joan. Something very annoying is happening with the CODES trial. They took a different approach to PACE. They transparently reported in the original Lancet Psychiatry paper that the treatment didn't work, unlike PACE investigators who changed the protocol midway through to cover up the lack of effectiveness. However, since that original publication, the CODES trial authors have gone on an offensive in multiple publications reporting on various secondary analyses to try and rehabilitate and spin their own negative results as positive. It's really insidious. You also see them arguing on twitter against their own methodological choices, dismissing objective outcome measures etc.

 

Thanks Sid. I hope they publish my rapid response on line. Not sure if it'll get read by the authors but I'd hope they would be alerted to it and it is suggested that authors respond.

It's a bit like Alison W et al's response to the FINE trial. That had non significant findings but there was chatter about the 2ndry measures for a while

Ultimately, I think people who think along the lines of 'everything we don't understand must be 'trauma' or 'anxiety that's not anxiety' are unlikely to shift their thinking because there was no or limited thinking in the first place. Just belief, prejudice, bias, woo, and large capacity to believe in one ow ability to never be wrong Maybe it's hard to 'reflect' from that standpoint

Onwards and upwards. I doubt serious people get bogged down in this, but some might get distracted. Patients need focus, curiosity and investment to understand underlying. I hope serious people are taking DS seriously

 

It's only going to get worse. This stuff has been going on for decades and has long passed the limits of what is reasonable. All that's left is unreasonable, and worse than that.

They have nothing but now they've had decades to put up, have done full loops around many times over. Of course they keep calling for decades more of this, and I have zero faith that funders and regulators will cut off their supply, but damn does it look more ridiculous by the day.

What I wonder is at what point do serious people start understanding that this sullies the entire profession, is the biggest fuel for conspiracy nonsense in history. Given how the denial of chronic health problems caused by COVID are gleefully blamed on vaccines by the conspiracy crowds, I'm not sure there's really a point at which reason will prevail, since the ideology itself blinds them to the problems it creates. They're just too comfortable way up there behinds their moats.