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  1. rvallee

    Who is Simon Wessely?

    Why is a psychiatrist in charge of a multi-symptom chronic illness..?? https://www.whatdotheyknow.com/request/why_is_a_psychiatrist_in_charge Dear Ministry of Defence, Gulf War Syndrome & Prof Sir Simon Wessely. It has been shown time and again that Professor Sir Simon’s published assertions...
  2. rvallee

    British Medical Association: "Known unknowns, and as yet medically unexplained diseases" by Dr David Strain

    I've heard a lot about this "science follows the evidence" thing. I'd love to see it in action one day, it's very slow going. Because it may be mere correlation, but there's no shortage of evidence to follow, if only bureaucratic paralysis could just stop getting in the way, and possibly stopped...
  3. rvallee

    Is there a link between allergies and ME/CFS?

    Copied post I've heard a lot about this "science follows the evidence" thing. I'd love to see it in action one day, it's very slow going. Because it may be mere correlation, but there's no shortage of evidence to follow, if only bureaucratic paralysis could just stop getting in the way, and...
  4. rvallee

    MElivet - Blog posts by Nina E. Steinkopf

    Not a credible source but from past interactions, they seem to know Vogt personally and interact with, so maybe just a slip.
  5. rvallee

    Long Covid in the media and social media 2022

    Oh, wow. Talk about not getting your money's worth. How did they manage to waste this much on absolutely nothing? Basically a few mobile apps, pamphlets and literally clinics without doctors. Healthcare seriously needs auditing. There is massive misuse of funds happening. Spending money on...
  6. rvallee

    Rehabilitation Interventions for Post-Acute COVID-19 Syndrome: A Systematic Review, 2022, Fugazzaro et al

    Findings don't advocate for something, people do. The findings here absolutely do not support that. So what is this advocacy doing here? This is explicitly advocacy, out of such a small number of biased low-quality trials. Especially in light of plenty of evidence that remissions and recoveries...
  7. rvallee

    Validation of child-adapted short scales for measuring gastrointestinal-specific avoidance and anxiety, 2022, Lalouni, Chalder et al

    This dowsing rod was tested on that other dowsing rod and they both agree therefore dowsing rods work. In rod we trust! Shmart. Seriously, in what way is this different from saying that a short-form questionnaire matching your personality to a Lord of the Rings species yields the same answers...
  8. rvallee

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Radical change should naturally exclude those who built the thing that needs to be radically changed. If it's serious, they will be banned, have nothing to contribute anyway.
  9. rvallee

    MElivet - Blog posts by Nina E. Steinkopf

    And I'm the king of Siam. I have a paper somewhere. Don't ask for confirmation.
  10. rvallee

    A general thread on the PACE trial!

    It's the culture that's failing us. It's not just technical fault, it's damn politics. The problem is people and lack of accountability. Continuing to pretend that health, and by extension healthcare, isn't inherently political is what makes the bad politics do so much harm. Like a sports...
  11. rvallee

    Patient Perspectives of Disease Activity, Medications and Substance Use in People with Fibromyalgia, 2022, Khoo et al

    I don't know what disease activity means, although I have an idea of what they mean here, but it really shows how little attention to details goes into this type of work. Because medicine failed them. But the framing instead puts the entire responsibility on the patients. Patients wouldn't need...
  12. rvallee

    News from Scandinavia

    What is this about? Uh... no idea why it's marked as sensitive content. It's just images of text that seem to be emails between Henrik Vogt and, I think, the medical authorities on the issue of who runs RN and how it relates to LP.
  13. rvallee

    Self-reported Tinnitus and Vertigo or Dizziness in a Cohort of Adult Long COVID Patients, 2022, Degen et al

    If I had a dollar for every time I've seen a physician dismiss "self-reported symptoms", as if there's any other kind... I'd have many dollars. I mean it's literally self-reported by definition, what kind of weird argument is that? It seems to be in line with how Edwards explains that medicine...
  14. rvallee

    USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

    No wonder the CDC is failing Long Covid, refuse to do anything about it. They literally can't learn, are stuck in the ideology. This is absurd level of incompetence and frankly a slap to the face. The CDC are being insulting on purpose with this stuff.
  15. rvallee

    Exposure to Repeated Cold Stress Influences Sympathetic and Cardiovascular Responses to Muscle Stretch in Decerebrated Rats, 2022, Hori et al

    Stress can mean literally anything, including going back and forth between hot and cold. How is that any more scientific than attributing the same effects to evil spirits? If it can literally be anything, it's nothing. Stress. Life events. Things. Stuff. Can this possibly be any more vague?
  16. rvallee

    MElivet - Blog posts by Nina E. Steinkopf

    I don't know who the @cfs_research account is and how they fit in that, but they said that Henrik was the only founder. A "patient" organization, founded by one MD along with a group of therapists working for LP. Right. Very credible. Basically RN is a front to work around laws that LP would...
  17. rvallee

    Estimating the Burden of Influenza-like Illness on Daily Activity at the Population Scale Using Commercial Wearable Sensors, 2022, Mezlini et al

    It's genuinely as if medicine is discovering the concept of illness, for which it has no useful box, only full health, hospitalization or death. Amazing. I'll never understand the casual dismissiveness of regular illness. It only seems to make sense in light of a belief in medicine that regular...
  18. rvallee

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Sadly predictable, there's almost always a personal connection. Now I hope that Javid has the courage to stand up to what's about to happen, for his niece(?)'s sake. Because he will see spitting rage and foaming at the mouth from influential doctors who will spew pseudoscience at him like it's...
  19. rvallee

    Improving the identification and treatment of co-morbid depression and/or anxiety in adolescents with CFS/ME, 2021, Loades (Ph.D. Thesis)

    Circular work: work that exists only to produce more work in the future. Always developing new programmes, never actually delivering anything. Even as all the new funding they get is based on their past work, which they can themselves pretend did not happen, unless it's to get more funding. As...
  20. rvallee

    Children With PANS May Manifest POTS, 2022, Chan et al

    Not entirely convinced of the full validity of a full resolution: Coincidentally? This doesn't sound that coincidental: Anyway I was looking for what treatment they used and: IVIG.
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