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  1. Snow Leopard

    Nature publishes response from Sharpe et al

    What evidence? That CBT/GET don't lead to objective improvements in functioning and no difference in self reports at the long term followup in the PACE trial. Sharpe needs to look at the evidence himself.
  2. Snow Leopard

    Cerebral Blood Flow and Heart Rate Variability in Chronic Fatigue Syndrome: A Randomized Cross-Over Study (2018)

    The results of this study are likely true -there is no major effect of HRV or cerebral blood flow post 'mild' exercise. I am basing my opinion on other heart rate and blood flow studies that have been equivocal overall.
  3. Snow Leopard

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

    Is it though? I mean almost no one actually reads what Malcom Hooper writes as it is way too long and nitpicky.
  4. Snow Leopard

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

    We know this is true. This is why the PACE trial was funded by the DWP - to achieve a goal. Of course it backfired as the study showed no long term effect, no meaningful effect on objective outcomes and dammingly, no effect on work/study/welfare outcomes.
  5. Snow Leopard

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

    Yes. Sadly some, like David Tuller, Malcolm Hooper don't seem to understand this. You don't throw everything you have in hope that something sticks, instead you choose the most fundamental issue and show that everything else falls like a house of cards.
  6. Snow Leopard

    Guidance for commissioners of services for people with medically unexplained symptoms - 2017

    Notice how dualistic this is? Patients are accused of being mind-body dualists, but assuming medically unexplained disorders* should primarily be treated with psychological treatments and that medical investigations and treatments should be avoided shows you that it is the medical/psychiatric...
  7. 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.
  8. 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!!!
  9. 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...
  10. 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...
  11. 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.
  12. 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...
  13. 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...
  14. 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...
  15. Snow Leopard

    COFFI - The international collaborative on fatigue following infection

    I don't understand what you mean by this.
  16. 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/
  17. 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...
  18. 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...
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