Just to clarify that the International League Against Epilepsy (ILAE) is the organisation of epilepsy specialists and researchers that also prints the scientific journal Epilepsia. So it's not an advocacy group or patient organisation and they have published several case definitions of epilepsy...
I still have my doubts about this because most of these studies were really small. Not sure if these results will hold up in a proper study with a pre-specified protocol, large sample size, adequate control groups etc.
Yes but in ME/CFS there aren't even non-specific biomarkers.
A person can be incredibly sick yet his main test come back pretty much normal. I'm not sure but I suspect in most other illnesses it will be easier to find abnormalities, even with low specificity, if a person has gotten so ill.
IMHO, the most important thing a hypothesis needs to explain is how a mechanism could cause the severe and chronic disability seen in ME/CFS while not showing any major disturbances in normal medical tests and various markers that have been tested repeatedly in ME/CFS patients. That's one of the...
In English, I think we can simply use the word illness if people find disorder or syndrome too confusing, so I largely agree with Jonathan (in Dutch we don't have the distinction illness - disease which makes things more complicated).
Just wanted to flag that the 2014 definition of the...
I'm not impressed either. I hope the current generation of ME/CFS researchers can come up with better hypotheses than this.
HPA-axis, cortisol, growth hormone, thyroid hormones, cytokines, oxidative stress etc. all these things have been studied in the past 30 years without showing anything...
Last year there was this large trial on CBT for PNES, called CODES, but the results for the primary outcome were negative. It reported:
https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(20)30128-0/fulltext
David Tuller wrote about it here...
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...
And here's a Cochrane review from 2014 on psychological and behavioral interventions for patients with PNES. It concludes:
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.
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:
This message is repeated throughout the paper:
So if I understand correctly, this preliminary study tested 4790 unique human proteins in a small sample of 20 ME/CFS patients and 20 controls. After controlling for multiple testing, 9 proteins showed statistically significant differences between the two groups.
These are summarized as...
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...
The authors suggest considering problems with connective tissue (joint hypermobility), small fibre neuropathy, mast cell activation in patients with pain and fatigue.
On the hand, they propose a multidisciplinary model based on the biopsychosocial approach and referral to a health psychologist...
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