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    Functional Neurological Disorder (FND) - articles, social media and discussion

    There is a discussion to be had about how the issue isn't just this, but the usage of this as a straw-man extreme to justify the 'but just a bit' and 'in the absence of anythign else' and all of the other justifications used by sadly a system that seems geared to as gut instinct end up...
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    Functional Neurological Disorder (FND) - articles, social media and discussion

    I couldn't agree more. In fact it has taken me this long with ME/CFS to see all of these parts just in time for watching it all play out almost in identical form here. So I can see all the intentions and pragmatic compromises of 'we'll build from this' and so on. But them not realising that bone...
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    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Good stuff that you've noted here. The PEM/criteria is particularly pertinent as it seems fundamental that a study is actually using the large proportion of money intended for a disease and its patients to investigate those who do have that disease. I would push for its compulsory inclusion...
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    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Agreed - analogies like suggesting Rosmalen is doing the equivalent of insisting on recruiting one's own cohort of 'ulcer-like maybe-ish stomach complaint subjects' in the time of H-Pylori tests and scans showing severity, and when there is a cohort of people with H-Pylori tests there to be...
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    Functional Neurological Disorder (FND) - articles, social media and discussion

    I'm being cautious or trying to be as I don't feel I'm fully on top of what is going on re: who is getting put into this FND bucket. But this video has someone who had a stroke having had epilepsy previously and notes the fnd part is issues with the messaging from the brain to other areas who...
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    Who is Simon Wessely?

    And so I've had a think and do believe that the analysis of the individuals and modus operandi are also important - and merely need to be coherent (build the picture) rather than repetitious (7 repeats rule of advertising) because it is semantic memory. We also forget that humans are intrigued...
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    Who is Simon Wessely?

    That's an important point to make. Repeating the most factual things in particular too. Such as Camelford. Those need direct repetition. I'm pretty sure I'd add the Maudsley and their philosophy type groups etc to the list because I can often feel that influence in some of the more unusual...
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    The “hurtful” idea of scientific merit—WSJ

    Oh I'm aware of its original intention in Darwin's actual writing but where I saw it most quoted of recent years was indeed wrong-usage e.g. in newspaper comment sections from people from certain ideologies used just as you note: to infer probably best to let the weakest struggle etc. It's a...
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    The “hurtful” idea of scientific merit—WSJ

    Am I right in thinking he is the one behind ‘the selfish gene’ book which pushes the idea of Darwinism survival of the fittest, being selfish good, type thing?
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    BBC article: Are Iranian schoolgirls being poisoned by toxic gas?, 2023 (quotes Wessely)

    Key epidemiological factors like what? Being girls has been one cited by his ilk so I’ll assume that but interested to know if he’s bothered with any others?
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    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Indeed and certainly with time. But there is also the e.g. holding a phone is OK then arm begins shaking as those muscles get tired. As this seems to recover somewhat enough that phone can then be held again at another point in the future it is interesting if this is being studied separately. I...
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    Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/CFS: an exploratory study, 2024, Stussman +

    and that we don't know what symptoms are 'rolling PEM' or being above threshold in the 'perform but don't do yourself much good' zone vs are what .. constant something or other .. unless we have a way of really knowing when PEM actually ends. For all we know, as we eventually even if just for...
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    Evaluation of Brain-Body Health in Individuals With Common Neuropsychiatric Disorders, 2023, Mosley et al

    I haven't read the whole thing but can't imagine that this study was done without the individuals with most of the conditions being on their medications, and certainly they would have been on these for the years before (which tends to be where any differences will take place). So how on earth...
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    Autoantibodies against muscarinic cholinergic receptor in chronic fatigue syndrome, 2003, Tanaka et al

    googling (as couldn't open full text) found the following which I don't know whether is of interest or too much of a sidebar. https://www.meresearch.org.uk/research/ach-review/ full paper about a page scroll down. it is from not long after this paper and is pulling together this with other 'of...
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    Autoantibodies against muscarinic cholinergic receptor in chronic fatigue syndrome, 2003, Tanaka et al

    I'm no expert in this area so would only be a second pair of eyes trying to use common sense and maths, but the link to the full text doesn't open for me so I don't know whether that is the same for others who might have more answers. I don't know whether there are more clues re: the y-axis that...
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    Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/CFS: an exploratory study, 2024, Stussman +

    I hope that didn't come across as a 'you should have' , but it is useful to contextualise any methods or results whatever the subject area in the spirit of wanting to one day put the big picture together of these things. That's why I said it is a difficult job: PEM's going to be a tricky one...
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    Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/CFS: an exploratory study, 2024, Stussman +

    I agree that studying PEM properly needs to be one of the priority areas. And definitely that it needs to be for more than 3 days (particularly as I can't imagine a set-up where all paricipants might be guaranteed to not have PEM re-triggered at some point e.g. from noisy or uncomfortable...
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    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Indeed, I am imagine as usual for these things from this area it will all be very back-to-front where the misinformation is information and what they call facts is misinformation. When people note these groups and individuals are closer to populist politicians I do have to agree. I suspect...
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    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    yep it’s a weird delusional claim that has been pushed by the psychosomatic school to persuade bystanders they aren’t the ones who have self-interest but it’s those who might disagree with them who are biased. god knows how bad a bystander you have to be to try and pretend you are persuaded of...
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