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  1. rvallee

    An open trial of biofeedback for long COVID, 2024, Emerson et al.

    You could easily get those results with a spooning pillow. Or maybe giving them a spa bath at home that they can use whenever they want. It's obvious that the field is unwilling to address is validity crisis. They love the fake results too much. They want them to be true so bad that they are...
  2. rvallee

    Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study, 2024, Royston et al.

    I mean she wasn't lead author. She has basically been the go-to expert on pediatric "chronic fatigue" for decades, and was probably lead author on more papers than any other research has authorship. She wasn't on Clock either, instead it was some other pediatrician who never did any research on...
  3. rvallee

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    So, exactly as a reasonable person would expect of a seriously ill group. They make a calculation based on rewards that scales with difficulty. And being able to do less, they do a bit less. Even the controls behaved the same way, just not as impaired by their ability so applying a slightly...
  4. rvallee

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Bit like that weird "forensic" paper we saw the other day. There is still this idea that they can catch people contradicting themselves and that it means something. And this is from the ME Association so it's not even antagonistic, but the idea that catching people in a contradiction is...
  5. rvallee

    Making a 'Charter for Ethical ME/CFS Research'

    Right now, people have already been doing that for decades and they do not have our interests in mind. It's not ideal, but someone always makes the decisions in the end, if those decisions go explicitly against our interests, if the people making those decisions do not have a stake in our...
  6. rvallee

    Making a 'Charter for Ethical ME/CFS Research'

    All science is political. All of it, even more so when it comes to health. It would be amazing if it were above it, but it's not. Scientists and MDs are humans, with all the flaws and nonsense that comes with it. When it comes to medicine, I'd even say that it's more political than scientific...
  7. rvallee

    Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study, 2024, Royston et al.

    Similar to Wessely and PACE being his brain-child, having heavily participated in it, but did not put his name anywhere near the published material, then wrote an editorial pretending to be some neutral observer marveling at how great a study it was. Given her role, Crawley should have been a...
  8. rvallee

    UK, Guardian, Oversensitive and overreactive: what is nervous system dysregulation and how can it be resolved? 2024

    Impressive. Old Freudian nonsense. Pushes alternative "holistic healing". Frames it entirely as emotional symptoms in response to distress and conflict. Zero mention of COVID, or how it's such a common Long Covid issue. It even mentions how it's more prevalent these days, how more people are...
  9. rvallee

    Forensic assessment of somatoform and functional neurological disorders 2024 Datta and Blum

    Almost annoyed that I can't read it, because wow are the so many layers of wrong. Starting with the word forensic, which is the investigation of a crime. And of course the fact that most forensic "science" has been revealed to be pseudoscience of almost zero validity. Their wild claims of being...
  10. rvallee

    Burnout, Compassion Fatigue, and the Long Haul of Caring for Long COVID, 2024, Ramers et al

    I don't want my emotional needs to be met by clinicians. I could not care less about this, it's not going to happen anyway, this is not what medicine is for. Certainly not as long as they work in a system that is responsible for failing and mistreating us. I also don't care about hearing simple...
  11. rvallee

    [MUS] are common in women in tertiary neurological healthcare center: A survey cohort study of persons investigated for suspected [MS] 2024 Novakova+

    So, in a MS clinic, patients suspected to have MS based on having MS-like symptoms without a definitive explanation, 17% of which received an alternative diagnosis, some are found to have MS-like symptoms based on asking them about MS-like symptoms even though the diagnosis cannot be confirmed...
  12. rvallee

    Prevalence of orthostatic intolerance in long covid clinic patients and healthy volunteers: A multicenter study, 2024, Cassie Lee, Darren

    Well, you first have to figure that out, having refused for decades to even try, or even acknowledge that this is a thing that happens to people after infections, even mild ones, and that it's not 'biopsychosocial', or whatever. If you want the result of effort you have to put in the effort...
  13. rvallee

    Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study, 2024, Royston et al.

    So, this is a study of care providers using a now defunct guideline who show no useful knowledge of ME, severe or otherwise. So this is by definition only patients who are under someone's care, which is a minority, and they are overseen using a harmful care model that was deprecated between the...
  14. rvallee

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    They don't need grants, they're using the intramural fund. So not only are they wasting this funding, they're wasting funding that is supposed to be going to serious research. It's just as insulting as Rosmalen getting funds that were explicitly written to exclude anything psychosomatic. We all...
  15. rvallee

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Unfortunately, this is how biopsychosocial works. We've long been a women's illness, despite lots of men being affected. For decades a minimal tendency towards a bit more childhood adversity, likely nothing but an anomaly, was emphasized to mean that it's a major cause, even though many of us...
  16. rvallee

    Scots scientists uncover DNA 'switch' which affects anxiety levels

    Mice these days, always worried and stressed about their marbles. Not like the mice back in my days, who had respect for their elders and didn't worry, they just carried on like normal mice do. At what point does it even make sense to speak of anxiety, which is defined as worrying about things...
  17. rvallee

    Revisiting the jumping to conclusions bias in functional movement disorders, 2024, Sainz-Amo et al.

    Meta jumping to conclusions. Beyond parody. For sure, someone in this is very susceptible to suggestions, but like most things psychosomatic, it isn't the patients.
  18. rvallee

    Review What is the impact of long-term COVID-19 on workers in healthcare settings? A rapid systematic review of current evidence, Cruickshank et at, 2024

    The challenges being that being a professional makes no difference here, they are treated like the rest of us. It's bizarre how every study about HCPs with LC always emphasize that, and yet it's not even a real difference. It's precisely because once you are a patient you become an unreliable...
  19. rvallee

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    I haven't read much of that from the ME community, I guess by the point we start talking about it online we're so far done that it just doesn't get discussed, but judging from the LC community, the only reason why anyone prefers to meet with a clinician is because they expect more than simply...
  20. rvallee

    "Updates on long Covid and the brain" (The Psychologist, The British Psychological Society)

    A bit ambivalent in that the discrimination (it's not stigma it's overt, clearly bigoted discrimination) originates within the medical and psychological professions. Although it would be more fair to say that medicine, especially neurology and psychiatry, have a lot more blame here than...
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