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  1. rvallee

    Long Covid in the media and social media 2022

    Like we're still at day 1. Nothing learned at all that we didn't know for a long time. Hell, like we're still in the 1980's. The only difference it that it all isn't almost universally dismissed as silly nonsense, just mostly misrepresented and with bits of BPS pseudoscience here and there...
  2. rvallee

    EDS, hypermobility, and the link, if any, to ME/CFS

    No one knows or cares about those losers, this isn't how patients are approaching this. It's literally just people suffering from odd symptoms that physicians can't explain and trying to make sense of. This is medicine's job and it's not happening so a void of expertise, made through a legal...
  3. rvallee

    United Kingdom: Science Media Centre (including Fiona Fox)

    It's a poem by a German pastor published in 1946, about how the Nazi regime disappeared one group of marginalized people after another, until all that was left were good Germanic/Aryan Nazis. First they came for the socialists, and I did not speak out— Because I was not a socialist. Then...
  4. rvallee

    Excessive Postural Tachycardia and [POTS] in ...: Associations With Distress, Impairment, Health Behaviors, and Medication Recommendations, 2022,Klaas

    I think they noticed pwPOTS drink more water but don't understand that they do to manage the symptoms. Clinical psychology can only do associations, so they don't know how to interpret information that has a reason for being, since they probably disagree with that reason (thus making themselves...
  5. rvallee

    United Kingdom: Science Media Centre (including Fiona Fox)

    That story sounds like complete BS. They continued publishing papers after that and always relish any publicity that puts them in the limelight, still do. They keep demanding to do more research and obviously publicize it every time. This is beyond naïve, no one in such a high level position is...
  6. rvallee

    Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study), 2021, Stephenson and Crawley

    Bizarre things happening with recruitment for this study, participants don't even appear to be told they are taking part: Then again Crawley apparently doesn't need informed consent, or even consent, for her papers. This has been validated by research authorities. Somehow. I had to laugh at...
  7. rvallee

    United Kingdom: Science Media Centre (including Fiona Fox)

    This is the actual title? Because if so this is grounds for lawsuits, she is literally calling us Nazis. And not just regular Nazis who were just following orders, it comes from a poem published in 1946, after the war, after all the horrors of the Nazi regime were exposed to the world, after the...
  8. rvallee

    Long Covid in the media and social media 2022

    I had to laugh at that. Typical. I'm not going to bother frankly, I'm done with hoping it won't be massively disappointing, it always is. I don't have the energy to tell them every wrong thing they'll do, will leave this to LC whipper-snappers.
  9. rvallee

    EDS, hypermobility, and the link, if any, to ME/CFS

    Some patterns require large data sets and rigorous efforts to find, e.g. mononucleosis causing MS.
  10. rvallee

    EDS, hypermobility, and the link, if any, to ME/CFS

    It's very rare for patients to hear this first from a physician. Not even 10%. They are dirty words in most clinics and hospitals, never used at all. The vast majority of patients find out, through lists and patterns of symptoms, on social media and bring it to physicians, who then usually say...
  11. rvallee

    EDS, hypermobility, and the link, if any, to ME/CFS

    There is plenty of evidence for this in patient reports. No scientific evidence, though, because medicine is unable to do this competently. But anyone, like me, who has spent significant time reading Long Covid testimonies can see this pattern easily. I have read thousands by now, dozens every...
  12. rvallee

    Long Covid in the media and social media 2022

    So the UKHSA asked a prominent pandemic, and LC, minimizer to talk about Long Covid in children, who is also the clinical lead for Covid in children. Cool. Cool cool cool. There's also a huge infectious disease conference happening soon that invited 2 prominent LC deniers and general pandemic...
  13. rvallee

    Long Covid in the media and social media 2022

    I have a few ideas...
  14. rvallee

    Long Covid in the media and social media 2022

    The damning testimony NHS staff have submitted to the Covid inquiry | ITV News
  15. rvallee

    Analysis of malingered psychological symptoms in a clinical sample for early detection in initial interviews, 2022, Barbosa-Torres et al

    Trying to make sense of this nonsense, there are so many bizarre claims and blatant assertions of ignorance, but what this appears to me is to build up BS evidence that it's possible to check for simulated symptoms to use in a court setting and reject claims. Which is in a way bizarre since the...
  16. rvallee

    UK Government rejects Grenfell Inquiry recommendations on evacuation of buildings as ‘not proportionate’

    Shades of "healthy people don't want to wear masks so disabled people will have to be ostracized because the healthy people want to paaaartay".
  17. rvallee

    A Novel Digital Self-management Intervention for Symptoms of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease, 2022, Moss-Morris et al

    "Novel". "Theory". The "theory", somehow "novel", is the exact same as usual: Their "theory", the same as usual, has the "potential" to do something. How compelling. Einstein had nothing on those geniuses. The joke is that this is an actual field of medicine that has immense power over a...
  18. rvallee

    Trajectory of long covid symptoms after covid-19 vaccination: community based cohort study, 2022, Ayoubkhani et al

    One thing that bothers me, and this study is no exception, is that the vaccines' efficacy clearly attenuate over the course of a few months. But with the regular vaccine schedule, until recently, all studies were on recently vaccinated people, simply because that's how the timeline happened. So...
  19. rvallee

    Long Covid in the media and social media 2022

    I'm pretty sure the 75% is an undercount. I still see a huge trend in LC forums where most have no formal diagnosis, their PCP simply refuse to use it. They'll have generic mental labels like depression or anxiety. So at best it's a study of physicians' use of that diagnostic code, whether it's...
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