Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review Brown & Reuber 2016

ME/CFS Skeptic · Jan 29, 2021

Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review - PubMed (nih.gov)
I thought this review from 2016 of Psychogenic non-epileptic seizures (PNES) was quite interesting because it suggests we know very little about this condition and that the name - implying a psychological cause - is inappropriate.

I haven't found much criticism of the PNES however in the literature, for example by patients or physicians who think the attribution to a psychological cause is inappropriate. Large epilepsy foundations also seem to promote the PNES and psychogenic theories about it, without difficulty. See for example: The Truth about Psychogenic Nonepileptic Seizures | Epilepsy Foundation

Are there forum members who know more about PNES? For example reliable evidence why the term psychogenic is justified or criticism of why it is not?

ME/CFS Skeptic · Jan 29, 2021

The review is quite long: here are some interesting quotes:

The term is potentially problematic, however, as it makes (arguably unsubstantiated) presumptions about the etiology of these events, whilst maintaining an unhelpful narrative about the distinction between mental and physiological processes
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Although PNES are considered a mental health condition, there is little agreement on the psychological mechanisms underlying these events. Various theories exist, with theorists citing findings that seemingly support their positions but often failing to report contradictory studies or the limitations of the studies that they do cite
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One of the most commonly cited reasons for regarding PNES as dissociative phenomena has been evidence suggesting that many PNES patients describe co-morbid dissociative symptoms (e.g. Kuyk et al., 1996) [...] Although the median between-group difference (d = 0.66) across thirteen studies suggests that some of the non-significant differences are attributable to low power, it is also possible that this effect size is inflated in studies with relatively low quality ratings. Indeed, the largest and most rigorous study in this area (Alper et al., 1997) failed to find a significant difference between 132 patients with PNES and 169 patients with complex partial epilepsy on the DES
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Although measures like the DES are often presented as indices of integrative capacity, such scales measure symptoms rather than mental functioning per se.
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The presence of MUS or high symptom reports more generally are often interpreted as evidence for a defensive process in patients with PNES, particularly in the apparent absence of significant emotional symptoms [...]We were only able to identify a single study that explored the possible function of physical symptoms in patients with PNES more directly. Testa and Brandt (2010) used the Implicit Association Test (IAT) to investigate whether PNES patients exhibit positive covert attitudes towards sickness, which might be regarded as evidence for an unconscious motivation to adopt a “sick role”. Contrary to prediction, there were no differences between PNES (n = 48), epilepsy (n = 59) and healthy (n = 33) groups (d = 0.19).
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There is consistent evidence that the difference between patients with PNES and those with epilepsy on measure of subjective anxiety symptoms is relatively small, with both group averages in the moderate range. Moreover, there is some evidence that this difference is attributable to a sub-group of PNES patients with high levels of psychopathology
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Although it is commonly assumed that PNES develop in response to stressful life events, the evidence for a temporal relationship between such events and PNES onset is limited to a single, very small study.
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ME/CFS Skeptic · Jan 29, 2021

Here are some of the main conclusions:

despite the considerable quantity of publications, most research on these aspects of PNES has been of limited quality. Whilst we identified a small number of high quality studies, most were only powered to detect large effect sizes and used non-experimental designs with selfreport measures and control groups of questionable relevance. Many studies (or the reports that describe them) are beset by methodological shortcomings, particularly a failure to report how PNES were distinguished from anxiety disorders, the use of highly selected populations in specialist settings, and the use of control participants from different demographic groups. Even apparently basic methods for ensuring internal validity, such as the use of standardised measures, are neglected by some researchers.
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Also problematic is the tendency for researchers to conduct studies that simply repeat what has been done previously (consider, for example, the large number of studies on dissociation, anxiety, somatization and the MMPI), leaving fundamental questions about the aetiology and mechanisms of PNES unanswered
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Given the state of the evidence, perhaps the most important clinical implication of our review is that theories of PNES are not as well established empirically as often thought
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we must be careful not to create the false impression that PNES are better understood than they really are, and to maintain an open mind about the best way of formulating a particular presentation [...] To that end, we must resist the temptation to assert that PNES are always the product of early trauma, life adversity or emotional stress, and that the patient’s claims to the contrary must be a sign of resistance or defensiveness. Whilst this may prove to be the case, we must remain open to the possibility that it is not. Similarly, a degree of humility is essential in the inevitable turf wars that spring up between clinicians of different theoretical persuasions
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rvallee · Jan 29, 2021

I don't know much but noticed that many with Long Covid had such seizures without any of the expected findings on EEG. They seem to mostly diminish with time, but it's definitely one of the rarer outcomes so hard to say.

So a pretty decent chance that they are a less common consequence of whatever happens when infections don't resolve entirely, like POTS or brain fog, just one of a lottery of unfortunate outcomes. Almost impossible to study without large scale longitudinal studies.

It's certainly a better explanation than any of the usual nonsense coming out of MUS land, in that at least it's an actual explanation, not just yet another deus ex machina.

ME/CFS Skeptic · Jan 29, 2021

Here's a systematic review of surveys of patients with 'psychogenic non-epileptic seizures'.
What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies - PubMed (nih.gov)

It concludes:

Many patients shared a sense of uncertainty surrounding PNES, often resisting psychological explanations. Negative experiences with healthcare professionals were common. Patients seeking validation of their experiences often reported feeling ignored or doubted
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This message is repeated throughout the paper:

Despite the fact that in the current medical thinking PNES are conceptualised as reactive or largely “psychological” [16,17], patients often reject psychological explanations and consider their problem as at least partly physical [18–20].
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In other studies, some struggled to see how the explanation of the diagnosis was relevant to them [61,62] and that a psychological explanation did not fit their lack of past difficulties
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Monzoni et al. reported that most patients exhibit resistance to the doctors’ psychological accounts of their disorder [...] In another study, examining recordings and transcripts of clinical encounters, patients were perceived to be ‘defending themselves’ because they seemed to interpret the doctor as making ‘accusations’ when explaining the link between psychological factors
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The majority of patients had no knowledge of PNES prior to diagnosis. The diagnosis was associated with feelings of ‘shock’, ‘confusion’ and ‘anger’ (statement 8) [42,43,45,46]. A common theme among patients was ‘disbelief’ or ‘uncertainty’ about the diagnosis [42,46,61,62]. Many resisted the diagnosis as a result of ideas about mental illness – believing ‘seizures could not be caused by a psychological condition’ [55] – or not seeing themselves as mentally ill
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Many patients continued to harbor the belief that the cause was organic in nature, such as a head injury [47] or epilepsy (statement 9) [43,45,62].
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Across several studies, patients discussed a perceived lack of understanding or disbelief by professionals (statement 13) [46,47,49,55,56,61,62]. While some patients explained that the doctor played a large role in ‘convincing’ them PNES are ‘real’ [55], others felt it was necessary to convince their doctor their seizures are genuine [58].
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ME/CFS Skeptic · Jan 29, 2021

And here's a Cochrane review from 2014 on psychological and behavioral interventions for patients with PNES. It concludes:

There is little reliable evidence to support the use of any treatment, including CBT, in the treatment of non-epileptic seizures
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There was a randomized trial of CBT by Goldstein et al. 2010 that initially reported benefit but the differences were no longer statistically significant at follow-up.

ME/CFS Skeptic · Jan 29, 2021

Also interesting is that PNES frequently occurs in patients who have epileptic seizures. See for example:
read://https_www.ncbi.nlm.nih.gov/?url=https%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC5862101%2F

Soo patients with epileptic seizures frequently have this mysterious psychiatric disorder that also causes seizures...? That seems quite unlikely, to be honest. To me, it suggests there might simply be a connection in the physical pathology of both types of seizures.

ME/CFS Skeptic · Jan 29, 2021

Michiel Tack said: ↑

here's a Cochrane review from 2014 on psychological and behavioral interventions for patients with PNES. It concludes:
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Last year there was this large trial on CBT for PNES, called CODES, but the results for the primary outcome were negative. It reported:

CBT plus standardised medical care had no statistically significant advantage compared with standardised medical care alone for the reduction of monthly seizures. However, improvements were observed in a number of clinically relevant secondary outcomes following CBT plus standardised medical care when compared with standardised medical care alone.
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https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(20)30128-0/fulltext

David Tuller wrote about it here: https://virology.ws/2020/06/11/trial-by-error-a-kings-college-london-press-release-hides-the-bad-news/

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Psychological and psychiatric aspects of psychogenic non-epileptic seizures (PNES): A systematic review Brown & Reuber 2016

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