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  1. Snow Leopard

    Stamina levels before ME/CFS?

    Easily. Endurance was my strong point. I did 50 km bike rides as a child.
  2. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    Another one of those BMJ Christmas specials?
  3. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    They need to recognise that this is a special case and the name is just a temporary placeholder. Names based on vaguely defined symptoms are not well liked, I wonder if they ever actually asked patients systematically before deciding on such policy...
  4. Snow Leopard

    Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics, 2018, Lipkin et al

    I haven't spent the time making sense of this yet, but the supplementary tables look interesting as mentioned by @Forbin. I will say that on first glance I have noticed several errors with the references referring to the wrong papers, which is disappointing, perhaps publishing errors?
  5. Snow Leopard

    The Effect of Curcumin on Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An Open Label Study, 2018, Visser et al

    Exactly. These sorts of studies are suggestive of further study only, they are not generalisable treatment outcomes.
  6. Snow Leopard

    Ron Davis: Grant award: Molecular and single-cell immunology in ME/CFS

    Thanks Simon. This particular point is certainly of interest to those of us who have a strong family pattern of autoimmune disease.
  7. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    The problem is that well, 'malaise' is one of those objectionable words too. The central characteristic of CFS is fatigability, rather than fatigue too, which suggests they misnamed the symptom complex in the first place.
  8. Snow Leopard

    Trial of CT38 for ME/CFS by Cortene Inc.: big claims being made...

    The choice of 2-Day CPET as an outcome measure is certainly very interesting. The downside is that it will create a bias towards who will participate in the first place. I think the primary concern is want to see whether the (exercise testing) protocol is acceptable for patients. It is unclear...
  9. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    The problem is that we don't have processes to firstly identify what name will be most useful in terms of patient preferences and secondly test potential names across the various interested patient groups around the world to see how they are perceived and how well they are liked. One thing that...
  10. Snow Leopard

    PACE trial TSC and TMG minutes released

    I was under the impression that larger sample sizes are not about establishing efficacy, they're about uncovering potential rare adverse events. You are correct that if it takes 160 patients per arm to achieve minimal statistical significance, the effect is unlikely to be clinically significant.
  11. Snow Leopard

    Applicants needed for Columbia ME/CFS Research Center Community Advisory Committee

    I plan on applying, just sorting out my referees! :)
  12. Snow Leopard

    PACE style CBT for CFS/ME - should it be scrapped?

    Yes it should be scrapped. CBT can be useful for some people, as far as coping with chronic illness is concerned. But it is never useful when the focus is gaslighting e.g. denying that people have an underlying disease that can't be cured simply by changing thoughts and behaviour. (PACE style)
  13. Snow Leopard

    (Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

    It's very frustrating when people who aren't in remission are promoted with great testimonials. It's common with a lot of "treatments" that are pushed these days (whether it is supplements, off-label drugs or talking therapies).
  14. Snow Leopard

    (Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

    Doesn't look that bad to me, but I understand concerns that some of the people involved don't look at the evidence very deeply and thus may be drawn to inappropriate conclusions.
  15. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    Twitter is not exactly the right place for this discussion, but then we haven't been able to chat with Dr Sharpe in any other way so...
  16. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    By now Sharpe is likely well aware of this thread, just FYI...
  17. Snow Leopard

    How to create good quality research proposals?

    This is making the assumption that the underlying demand for funding by high quality proposals/teams is not there. But what concrete evidence do we have that this is true? All research proposals are inherently risky - there is no guarantee there will be a groundbreaking result. Given a lack of...
  18. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    "I'm going to block you because" I don't want to answer difficult questions and then saying "kind regards". This is passive aggressive to a tee.
  19. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    There is also patient selection bias - those who are unable to exercise would never have participated in the PACE trial in the first place.
  20. Snow Leopard

    Dan Peterson at the discovery Forum 2017

    Given the EBV-lymphoma link, could this simply be a long term consequence of prolonged EBV infection, rather than ME or CFS in general?
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