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  1. rvallee

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    Sure, but I can't imagine a physician being interested in doing something meaningful deciding against it on this basis, or even being influenced. It's just noise, every disease has weird ideas being floated around, sometimes insistently by patients, and none of this usually happens. It's a...
  2. rvallee

    UK House of Lords/ House of Commons - relevant people and questions

    Words and their meaning, why bother?
  3. rvallee

    UK House of Lords/ House of Commons - relevant people and questions

    Pretty obvious that the naming of the "final" plan was meant in a "this is the last thing we will be doing or talking about it, we are done, this is final" way
  4. rvallee

    [LC] Does Not Impair Hemodynamic, Vascular, or Autonomic Responses to Maximal Exercise: Sex-Stratified Study in Young Adults, 2026, Rodrigues et al

    It would actually support the known fact that none of this is deconditioning, but absolutely not the belief that exercise is a solution. Good grief. I don't know which is worse: lack of reasoning, or bullshit reasoning that makes no sense. But of course this actually means this study is...
  5. rvallee

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    This I fully agree with. We do have to warn people, but this is an explicitly abusive situation where systemic abuse is the main threat to our survival and well-being, and it is the actual framing that should be adopted. It should be treated the same as advice on how to deal with violent abuse...
  6. rvallee

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    Ultimately this is the main reason why it's happening. It's not because it's more convincing to doctors, it clearly isn't, it's about making it possible for people who share the same problems to group and communicate. It's not possible to solve a problem without identifying it, without naming...
  7. rvallee

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    ME/CFS is also not an accepted diagnosis, so it changes nothing. I have no idea what this discussion is even about, frankly. It's a distortion of everything that's happening.
  8. rvallee

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    This is explicitly, on the book, abusive behavior and abusive behavior is never fixed by the victims behaving differently or by asking the abusers nicely. It is fixed by punishing abusers, with consequences, and not tolerating it from rising up again from the top down. We can't get across to...
  9. rvallee

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    Exactly. They don't. The idea that there is anything we could do, or not do, to make a complete 180 shift is ridiculous.
  10. rvallee

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    I'm not convinced by this at all, as in 0%. This sounds very similar to "stop making him angry" domestic violence apology to me. For decades we were completely ignored, discriminated and lied to and about by the medical profession without any of this happening. Everything would be 100% identical...
  11. rvallee

    Evaluating working memory functioning in individuals with [ME/CFS]: a systematic review and meta-analysis, 2026, Penson et al

    That really should read "minimal quality". If it's only good enough to be included in a comparison, that doesn't mean "good to strong", it just means it meets the minimum level of quality they consider adequate. The mass of sloppy research in clinical psychology is a scandal that no one dares...
  12. rvallee

    Functional Disorders, Chronic Fatigue, Chronic Pain, 2025, Chattha

    Oh, that's not what it means, that's not what it means at all. Come on. Nothing good in history has ever come out of this much dishonesty. Absolutely nothing. Also, wow is this clueless about ME/CFS. There is zero evidence of this. When bullshit finds its way into textbooks, so many things...
  13. rvallee

    News from Canada

    Health is political. Health care is political. Medicine is political. It's incredible how this perfectly captures the banality of evil. It describes throwing millions of people in the trash. There is no uncertainty as to what happens when sick people are denied all forms of help and support...
  14. rvallee

    Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid

    That would make autoimmunity kind of similar to cancer, then? It can happen randomly, but it can also be amplified by series of events, which as far as our technology allows pretty much adds up to being random, or probabilistic anyway, since we can't realistically follow the whole chain of...
  15. rvallee

    Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid

    You think the recent studies showing that mononucleosis leads to MS have it wrong? Or that it means MS is not autoimmune? Obviously most infections don't cause identifiable autoimmunity, as far as we know, or at least none that cause illness that we can detect, but a lot autoimmunity does seem...
  16. rvallee

    Large-scale investigation confirms TRPM3 ion channel dysfunction in ME/CFS, 2025, Marshall-Gradisnik et al

    Considering how statistics are central to all medical research, this is really odd. Also it explains a lot. When we look at evidence-based medicine and how they abuse statistics, it might explain everything. They use the tools because they're told to use them, but don't really understand why...
  17. rvallee

    Pre-pandemic care-seeking patterns and subsequent diagnoses of post-COVID condition, [PVFS], and exhaustion disorder:... 2026 af Geijerstam et al

    Aside from check-ups and the like, I'm pretty sure close to 100% of GP visits are about 'symptom-based' issues. They don't bother defining what they mean by symptom-based, or I could not find it. Of course we know what they mean, but hot damn the euphemism shuffling is absurd. The bias here is...
  18. rvallee

    Review Cochrane review: Exercise for depression 2026 Clegg et al

    This is a very different interpretation than what we see in the ME/CFS review, where the evidence is far worse and the conclusions are almost marketing material. The evidence for ME/CFS is far worse than this and the review, which similarly only includes a small % of published trials, is...
  19. rvallee

    United Kingdom: ME Association news

    I know it's something that is discussed a lot, but I simply can't accept the idea that good intentions are compatible with doing something that not only has zero chance of helping anyone, but actually makes outcomes worse and delays real help. Especially not after literal decades of total...
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