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  1. rvallee

    United Kingdom: Independent SAGE

    A funny thing about this is that "scientists shouldn't share opinions" is an opinion. It's a valid opinion, one that is entirely dependent on execution, context and accuracy, but it is just an opinion. One that can take form in ideology, as a set of opinions. The idea that facts and evidence...
  2. rvallee

    What does it mean when an ME/CFS patient says they "got long covid" after catching SARS‑CoV‑2 (COVID)?

    Yup, here. Internal tremors for years, at times it was pretty intense. Was really interesting to see this with LC, confirmed so many things I suspected. For chest pain I only got an echocardiogram. I wonder if a better test would have shown something. Lots of myo- and pericarditis only seen...
  3. rvallee

    South Africa: eCPD Course Principles for the diagnosis and management of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)

    The first paragraph suggests this is probably the course created through Bateman Horne Center and published in the Mayo proceedings journal.
  4. rvallee

    The effect of water temperature on orthostatic tolerance: a randomised crossover trial, 2022, Lain T Parsons et al

    I can report, coincidentally, having switched from drinking room temperature water to cold water over the last few weeks. Zero noticeable change. Other than it's very soothing for the throat, which is nice. My throat is constantly clogged up so it can get irritated and stuffy. It's nice for...
  5. rvallee

    UK - NHS England online tool and clinics for long Covid.

    If anyone wondered whether our BPS overlords are behind it, of course they are behind it. Very telling that they are not citing their own work on ME, despite it being the bulk of their career. I don't see how identical work with MS is any more valid, but it sure helps with the narrative of how...
  6. rvallee

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    As much as this is... interesting to hear, it's admission of having failed to do their job properly for decades. Which we know, even said so. But that something this massive can be said as an afterthought, with zero expectation that it has any importance, says everything about why everything...
  7. rvallee

    A Shift in Approach: Assessment and Treatment of Adults With Functional Neurological Disorder, 2022, Keatley & Molton

    I was curious about the ethical challenges and oh boy does it make it clear how ethically challenged these people are: It's well-documented, in the FND/conversion disorder literature itself, that patients reject those diagnoses. This has always been the main reason they were withheld, because...
  8. rvallee

    Medically unexplained or not? Be aware of a somatic cause of Medically Unexplained Symptoms, 2022, Hilderink and van Vugt

    The whole system is to blame, so individual blame probably doesn't mean much here. Medical blame is for medical acts in a clinical setting, this is at a higher level, of making decisions that essentially force bad outcomes in clinical settings, but individual practitioners are complying with...
  9. rvallee

    Medically unexplained or not? Be aware of a somatic cause of Medically Unexplained Symptoms, 2022, Hilderink and van Vugt

    The only way I see this happening is with patients funding it. No institution would ever approve such a study, it's too confrontational, no one wants to risk exposing the lie. And it would need institutional support, working through clinical networks and directly engaging with patients and...
  10. rvallee

    Exploring the influence of telehealth on patient engagement with a multidisciplinary Non-Epileptic Seizure (NES) Clinic..., 2022, Watson et al

    They just can't help themselves putting their own interpretation as the only valid reasons: "initiating recovery". Upper floor clinics with elevator access are considered more accessible by patients with limited mobility than those who ask patients to simply crawl up on their ass to show they...
  11. rvallee

    A Shift in Approach: Assessment and Treatment of Adults With Functional Neurological Disorder, 2022, Keatley & Molton

    Very, very strong "beatings will continue until morale improves" energy. To continuously advise the problem as the solution to the problem. Like mindlessly trying the same key thousands of times, just in case it works the next time. And as always: it's brand new, never been tried before. Every...
  12. rvallee

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    As best as I can see, fault is almost always over compliance, harm doesn't actually factor into consideration. It's physicians who deviate from what they're told to do who get blamed, unrelated to the nature of what they're promoting. If complying is harmful, it can't be faulted. If not...
  13. rvallee

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    All of which is common out there in the real world. People are whiny and petty all over. The big question is how all of this is normal in medicine? Encouraged, even. Promoted, praised, rewarded, funded, beloved. Petty charlatans exist everywhere, only in politics, business and medicine are they...
  14. rvallee

    Long Covid in the media and social media 2022

    The ME omerta continues, zero mention. They actually list PEM first, without a single mention of ME. Amazing. Orwell was so wrong about having to rewrite the official record. As if people actually care what it says.
  15. rvallee

    Higher limbic and basal ganglia volumes in surviving COVID-negative patients and the relations to fatigue, 2022, Hafiz, Natelson et al

    Although that's nice and everything, it can't explain the relapsing-remitting pattern or PEM. So it can't have a significant impact on fatigue, as fatigue could not wildly change without matching changes in those regions if it's a significant cause. It certainly doesn't explain how some can...
  16. rvallee

    Medically unexplained or not? Be aware of a somatic cause of Medically Unexplained Symptoms, 2022, Hilderink and van Vugt

    One of the main ideas behind psychosomatic ideology is to test as little as possible, to end testing as early as possible, in fact to avoid testing at all. So yeah, it's a feature. By definition many diagnoses will be missed. For the same reasons allowing industries to self-regulate compliance...
  17. rvallee

    Specialized Biopsychosocial Care in Inpatient Somatic Medicine Units—A Pilot Study, 2022, Köbler et al

    None of those concepts have a reliable assessment and are maximally vague. They also have wildly different values to different people. It's just as valid as asking whether people's chakras are better aligned after chakra-realignment therapy. I don't specifically object to people pretending this...
  18. rvallee

    Unbiased immune profiling reveals a natural killer cell-peripheral nerve axis in fibromyalgia, 2021, Vivek et al

    For the biologically uninitiated (like me), wiki: Extravasation is the leakage of a fluid out of its container into the surrounding area, especially blood or blood cells from vessels. In the case of inflammation, it refers to the movement of white blood cells from the capillaries to the tissues...
  19. rvallee

    Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Chu, Jason et al

    I often wonder what hides beneath suicide causes, how much could be known if it were checked formally. It's been ongoing formal policy for decades to never speak of causes of suicide, and speak of it as little as possible, as it's alleged that some people follow through where they wouldn't have...
  20. rvallee

    An online breathing and wellbeing programme (ENO Breathe) for people with persistent symptoms following COVID-19:.., 2022, Phillip et al

    Not sure if it's this one or another, but the Irish government gave an amount in that figure to a singing program with some church (or hospital with a church name, St-James something?). About 5M, IIRC. I don't think it was for a trial though, I think it was to expand the program as is because...
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