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  1. Valentijn

    Pharma industry newsletter on ME/CFS drugs ('Pink Sheet') - Ampligen, Rituxan and KPAX-002

    Whoops, we were referring to droxidopa while neglecting to name it :-P I thought that was one you'd considered trying at some point via a certain program/trial, but couldn't due to the dosing being inflexible.
  2. Valentijn

    Pharma industry newsletter on ME/CFS drugs ('Pink Sheet') - Ampligen, Rituxan and KPAX-002

    Drugs which can raise blood pressure are very tricky. Too much, and it can be absolute hell (and even dangerous).
  3. Valentijn

    Pharma industry newsletter on ME/CFS drugs ('Pink Sheet') - Ampligen, Rituxan and KPAX-002

    I think there were some people who refused to even start on it with the restrictions on dosages. There was someone on PR discussing it - maybe @Gingergrrl ?
  4. Valentijn

    Pharma industry newsletter on ME/CFS drugs ('Pink Sheet') - Ampligen, Rituxan and KPAX-002

    A combination of supplements and a stimulant, from what I recall. Phase 1 showed it has no effect. I think this is the one where they were demanding very specific and rigid dosages. People couldn't start with a smaller dose, or adjust to a smaller dose, etc, if the mandated dose was too high...
  5. Valentijn

    Are PWME at greater risk of cardiovascular disease & diabetes? If so, what can we do about it?

    Diabetes can also occur due to mitochondrial disease. My fasting blood sugar is always higher when I've over-exerted recently.
  6. Valentijn

    Using PCs versus laptops when you're mostly in or on your bed

    Currently my monitor sits on the (large) tower case in front of the extension on an L-shaped couch where I can sit with my feet up. Sometimes we bump it a bit, but it's pretty stable, though definitely needs to be out of the way of regular traffic. The tower itself is completely stable, so...
  7. Valentijn

    Circulating leptin levels in patients with [ME], [CFS] or fibromyalgia a systematic review protocol, 2020, Musker et al

    That would require them to acknowledge that PEM exists. I don't think they've even said the name of that symptom.
  8. Valentijn

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    The short answer would be that criticism is allowed by the forum rules. The slightly longer answer would be that such criticism shouldn't derail a thread which has a different focus. So in many cases it might be more appropriate to start a separate thread to discuss criticism if it isn't...
  9. Valentijn

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    Yes, because she described the threats she did receive in the same article that published the mock-up she keeps trotting out, and the worst was "you will all pay". If the same purported threat was both phoned to Wessely and emailed to her, surely that would have been mentioned in the article.
  10. Valentijn

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    No, the text of the article indicates the only mention of balls was in a puported phone call to Wessely. The only threat Crawley claimed to receive in that article is an email saying "you will all pay."
  11. Valentijn

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    The article itself (paywalled) claims that the ball-cutting threat was made to Simon Wessely via a phone call. Presumably it wasn't recorded and we just have to take his word for that. But it certainly wasn't an email sent to Esther Crawley. The parts which do involve Crawley: Full text of...
  12. Valentijn

    Circulating leptin levels in patients with [ME], [CFS] or fibromyalgia a systematic review protocol, 2020, Musker et al

    This would be more interesting if it followed exertion or similar. I'm not sure we'd have much variation sitting around on an average day. A more in-depth article which appears to be about the same study is at https://meaustralia.net/2016/08/14/meet-the-scientists-dr-michael-musker/ Patient...
  13. Valentijn

    How to find a lightweight duvet?

    Ikea has some two-part "4 seasons" duvets which snap together. But either their UK site is complete shite and fails to mention that they can be part of a two-part set, or they don't offer two-part duvets there and have them as a thin or superthick version instead. Normal version...
  14. Valentijn

    Articles on Montoya and Mark Davis's Cytokine work

    Full text of the letter is at http://sci-hub.io/10.1073/pnas.1714011114 . Basically, they claim that they screwed up in the past and later decided their results weren't significant after all. I think this might be the same group who published a "nothing to see here" biomedical paper recently...
  15. Valentijn

    Eran Segal (Solve grantee): Personalised microbiome-based diets for blood glucose regulation

    The only consistent factor for my fasting blood sugar being high in the morning (I have diabetes now) is how much I've over-exerted recently.
  16. Valentijn

    Neurometabolites in anterior cingulate cortex in CFS:magnetic resonance spectroscopy study @ 7 Tesla

    Or ask patients if they're depressed. And believe them when they answer :rolleyes:
  17. Valentijn

    HRA registered CFS studiesthat could be of interest

    Unforutantely the Perrin study seemed a bit quackish in that regards. More akin to diagnosing based on posture than standing blood pressure, heart rate, or CPET, basically.
  18. Valentijn

    Neurometabolites in anterior cingulate cortex in CFS:magnetic resonance spectroscopy study @ 7 Tesla

    No, you're completely right. A common BPS trick is using inappropriate questionnaires then pretending that a difference from healthy controls is meaningful - even when patients are well under the threshold.
  19. Valentijn

    Neurometabolites in anterior cingulate cortex in CFS:magnetic resonance spectroscopy study @ 7 Tesla

    Or not depressed, since they don't meet the threshold for a diagnosis.
  20. Valentijn

    #UnderstandingPsychosis?

    Because they have a very large and nasty bias which results in unconditional support for anything involving Simon Wessely.
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