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  1. Snow Leopard

    Henrick Vogt: "intense negativity spread by individuals/CFS groups/researchers" partly to blame for family's suicide

    I suggest that only insensitive arseholes are going to think he's making a good point.
  2. Snow Leopard

    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    Maths is the best subject, I'll start a poll to prove it!!!
  3. Snow Leopard

    Open data and the role of citizen scientists in ME/CFS research

    I disagree, it is about partnership. Nothing about us without us. A great example is Lenny Jason who has long been willing to listen to the community and even collaborate. Also, as an aside, a surprising number of people on this forum come from scientific backgrounds, careers of which have been...
  4. Snow Leopard

    Open data and the role of citizen scientists in ME/CFS research

    They say "bona fide" but we know they really mean people screened not to poke holes in their work. I bet if a researcher like Carolyn Wilshire, Jonathan Edwards etc tried to get ahold of the data, they'd simply come up with excuses. Their policy is very different from the policies of the "open...
  5. Snow Leopard

    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    They probably think that cognitions of symptoms are the symptoms themselves.
  6. Snow Leopard

    COFFI - The international collaborative on fatigue following infection

    If it isn't immediately obvious, they're trying to include all of the post-infection cohort studies that they can. This includes studies lead by researchers who aren't popular on this forum...
  7. Snow Leopard

    COFFI - The international collaborative on fatigue following infection

    I somewhat disagree. There is value in following up these cohort studies to investigate factors that we currently lack evidence on, long term prognosis for example. Though they would ideally adopt fairly rigorous methods of defining recovery and estimating levels of disability, rather than the...
  8. Snow Leopard

    Restricted Spatial Windows of Visibility in ME (2018) Hutchinson et al.

    I am interested in sight issues as well as I suffer from strong eye pain and eye sight degradation over the last 4 years or so. The visual issues may be nonspecific and associated with fatigue in general, but it shows that our fatigue has physical effects and is not merely a mistaken signal to...
  9. Snow Leopard

    COFFI - The international collaborative on fatigue following infection

    I don't understand what you mean by this.
  10. Snow Leopard

    Vincent Deary, "CFS and the facts of life - an article for clinicians"

    Oh Deary ME! Earliest version that I can find (2006): https://web.archive.org/web/20061201082757/https://www.kcl.ac.uk/projects/cfs/health/
  11. Snow Leopard

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Bullshit. They can review the quality of the reviews process. They can review why they are selecting terrible reviewers. The process is known to be flawed and there is much discussion on this. https://www.rand.org/pubs/technical_reports/TR742.html http://www.bmj.com/content/343/bmj.d4797...
  12. Snow Leopard

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    This is not completely true, I've seen more than a handful of researchers at well known universities with good research plans who had their grant applications rejected. The NIH could fund more if they wanted to - some of their grant reviews have been biased/of poor quality. The other side of...
  13. Snow Leopard

    Tricia Pendergrast et al on housebound versus non-housebound ME-patients. Study correctly described?

    Well he's defending it because he is still a true believer.
  14. Snow Leopard

    IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

    The arguments about diagnostic criteria used in UK/Dutch CBT or GET studies is a distraction/aside when such studies have not provided any objective evidence of improvements.
  15. Snow Leopard

    Tricia Pendergrast et al on housebound versus non-housebound ME-patients. Study correctly described?

    I'm not at all amazed. Wyller's intended audience is not us, it is those in charge of making health policy and medical decisions. It is the perfect reply for that audience - an authorative "top scientists disagree", nothing to see here move along. If he engages with the details, they will go...
  16. Snow Leopard

    (Not a recommendation) Alastair Miller: The prognosis of CFS/ME

    The truth was a bit more gloomy hey? I guess he didn't bother reading any of the studies on prognosis. https://www.ncbi.nlm.nih.gov/pubmed/15699087 The rest of the conclusion about "prognosis for an improvement in symptoms" are still quite gloomy as the improvements are small
  17. Snow Leopard

    (Not a recommendation) Alastair Miller: The prognosis of CFS/ME

    Yes, I've heard the 1/3 + 1/3 + 1/3 anecdotes over the place - but he is not the only one to repeat this nonsense, for example I've seen Michael Sharpe repeat it (ABC radio Australia) referring to the PACE trial results. Michael Sharpe should know better - but we know he doesn't seem to care...
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