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

cassava7 said:
While this practice remains problematic, setting a minimal period of time before sharing the data of a large study is not unusual as it gives the authors enough time to publish all of their findings. I had not yet seen a group of researchers set an end date, though — this is worrying.
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Yes. I’ve never seen an ‘expiration date’ set like this.
 
It's weird how a cornerstone of science is peer review and yet the idea of post-publication peer review is not a thing, it's even widely known that journals and editors don't care much about errors after publication unless there is backlash to their reputation. Post-publication peer review should be even more significant than pre-publication, it should be the main form, otherwise errors just creep up, never corrected. Flawed research just keeps getting cited, almost like it's on purpose.

You can't even do that in the video game industry. If your game has bugs post-launch, you fix them, provide a patch. Otherwise people will not buy from you again. But it's different when you are a complete monopoly on a completely inelastic service, one where people don't have a choice, there is nothing else. The demand for healthcare is infinite, so they can simply neglect a significant % of their duties and still have too much work.
 
cassava7 said:
I had not yet seen a group of researchers set an end date, though — this is worrying.
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Should be banned outright. A core condition of formal peer-reviewed publication must be that the data is made permanently available to the public (with appropriate anonymity safeguards). The cost of doing so is trivial these days. No excuses.

IIRC, PACE has a compulsory data retention period of 20 years. I am concerned about what happens after that, given that the authors have proved very reluctant to share any more than ordered to by a court.

It is outrageous, and very dangerous, that they can get away with this. The rest of medicine and science needs to wake the hell up to what is happening here, and object very loudly and urgently. :mad:
 
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Andy said:
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I had a quick listen so the patientbwas having very different seizures from the normal and may have never picked up by eeg.
Does that mean if certain tests aren't done due to doctor bias or not having knowledge about certain types of uncommon or rare disease that have uncommon symptoms.
We can safely say that the whole ideal or construct of fnd is useless and unhelpful if further tests are denied or not given or technology is not capable of detection or the doctor is completely incompetent, starved of time or doe not do a complete history.
The patient is trapped in this horrible nightmare because of doctor incompetence and therefore they should wipe clean fnd from the medical system and sometimes be frank and say I do not know.
 
Looking at all the authors it's the who who of fnd. Since the trial was completely crap and invalid. Does that imply that the complete ideal of fnd and associated treatments are crap and invalid especially from Dr Stone and gang
 
Just stumbled on this. After the primary outcome at 52 weeks showed no difference between the groups, they’ve since published a paper showing there was a difference at 6 months. I should note that seizure frequency, while a more objective outcome than various self-report questionnaires, were still based on self-report and thus prone to bias. CODES was an open-label study.

https://pubmed.ncbi.nlm.nih.gov/35228117/

Abstract
Purpose: The CODES Trial for adults with dissociative seizures had a predesignated 12-month post-randomisation follow-up point for outcome evaluation. We undertook an exploratory, unplanned, secondary analysis to evaluate the effectiveness of cognitive behavioural therapy plus standardised medical care (CBT+SMC) compared to SMC alone at 6 months post-randomisation, i.e., closer to the end of treatment.

Methods: The analysis of 6-month data followed our previous method of using multiple imputation and an intention-to-treat approach to analyse variables 12 months post-randomisation.

Results: The original trial primary outcome of monthly seizure frequency showed greater benefit from CBT+SMC than SMC-alone at 6 months (at p < 0.05). Of 13 comparable previously-defined secondary outcomes, 12 showed a significant between group effect (p < 0.05) in favour of the CBT intervention at 6 months. The average effect size of the comparable previously-defined primary and secondary continuous outcomes was 0.33 at 6 months vs 0.26 at 12 months. The estimated Incidence Rate Ratio (IRR) quantifying monthly seizure reduction was IRR = 0.72 (95%CI from 0.55 to 0.93) at 6 months compared to IRR = 0.78 at 12 months.

Conclusion: DS-specific CBT (plus SMC) produced evidence of significant benefits at 6 months post- randomisation (around which time CBT was complete) compared to SMC alone; for the majority of these outcomes, better results following CBT (plus SMC) had previously been reported at 12 months. Our pattern of results suggests that short- and longer-term follow-ups are necessary to understand treatment effects in this disorder. Studies only providing short-term follow-up data should be interpreted with caution.
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Somatic symptoms and related disorders in clinical practice
Psychogenic Non-epileptic Seizures: An Update on Diagnosis and Management
https://www.intechopen.com/online-first/1186691

Cognitive behavioral therapy (CBT) is one of the most useful approaches to a wide range of clinical and psychological factors. Cognitive behavioral therapy has a proven effectiveness for treatment of anxiety and depression, frequently associated with development and maintenance of PNES [104]. In a randomized trial of 12 weeks conducted on 66 patients with PNES, CBT associated with standard medical care showed a statistically significant reduction in seizure frequency at the end of the treatment sessions [105]
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Reference is this pilot study.

The disinformation mill in medical research is impressive. It's hard to accept what I'm reading in this chapter, it's just old myths and nonsense repackaged with pseudoscientific language based on evidence that doesn't even support what it says.

I'm getting at the point where unless it's confirmed by validated technology and independently replicable in controlled experiments (excluding clinical trials, they are not a valid form of evidence for this, are never replicated identically anyway), I assume that most claims in clinical evidence are just wrong. Only technology matters. Without it, human intelligence is almost entirely useless, it only amounts to "this person says so and I agree".

And the same is true everywhere, this isn't just in medicine, it's just turbo-charged there, with false ideas maintained by a toxic combination of church-like secrecy and hubris that keep on chugging because it allows for a complete lack of genuine accountability and quality control.
 
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