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  1. Snow Leopard

    Measurements of Recovery and Predictors of Outcome in an Untreated CFS Sample (2019) Thomas et al.

    Yep.... Coincidentally, protocol defined recovery following the PACE trial was about ~5% and independent of group allocation.
  2. Snow Leopard

    Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

    That's not what he said... But it is clear from the steering committee notes that they changed the outcome measures and thresholds before the formal analysis because of the weak results of the FINE trial (and potentially an overall feeling by those who saw patients that results were not strong)...
  3. Snow Leopard

    More PACE trial data released

    A point to consider is that there is a fundamental difference in worldview between the psychiatric view and other views. The psychiatric view puts the self-belief/reporting as fundamental. Sharpe and White have hinted as much over the years, when they say stuff like: patients don't care about...
  4. Snow Leopard

    Biotransformation profiles from a cohort of chronic fatigue women in response to a hepatic detoxification challenge, 2019, Erasmus et al

    I'm not sure how to interpret this one either. The reduction of total acylcarnitine in the "high fatigue" group does relate to previous studies and there does appear to be evidence of reduced fatty acid metabolism in CFS patients in other studies, though whether this is due to different activity...
  5. Snow Leopard

    More PACE trial data released

    Something to hide is a bold claim, but what is abundantly clear is they are not acting in good faith and seem to have deep contempt for anyone who asks difficult questions. I mean patients demonstrated to them (in The Lancet) their criteria for "normal range" was fundamentally flawed, in...
  6. Snow Leopard

    More PACE trial data released

    It is quite deliberate that they've made it so the data sets cannot be combined. I knew they had some sort of trick up their sleeves, I guess this is it.
  7. Snow Leopard

    News from Aotearoa/New Zealand and the Pacific Islands

    A population based prevalence study that attempts to measure DALYs would be fantastic. It's just a pity that health research funders don't think such studies are important.
  8. Snow Leopard

    NZ Listener - Ills thought out - Wilson 2019

    I guess that's a job left to journalists. (I'm quite jaded when it comes to reporting of science...) Marc Wilson has failed to note that how you think might not necssarily effect disease outcomes, but merely how patient reported outcomes on questionnaires. Likewise, how patients think affects...
  9. Snow Leopard

    Building an evidence base for management of severe ME (including sleep management)

    Yes, so much this... I never would have made it through university without a lot of sleep. Non-patients just don't seem to understand how hard it is - you don't have any energy to focus on anything other than eat, sleep, and sometimes even just one Uni subject at a time. Everything else falls by...
  10. Snow Leopard

    #MEAction: "Unseen: Black people living with ME"

    I daresay the Chinese are going to become leaders in genetic research in the foreseeable future, partly due to scale of economy and lower cost, partly cultural reasons, for example they don't have the same concerns about privacy as Western people. They are already processing complete human...
  11. Snow Leopard

    Building an evidence base for management of severe ME (including sleep management)

    When activity levels have been measured, it has consistently found a lack of evidence for the hypothesis that activity patterns or "resting too much" is a specific or sensitive perpetuating factor.
  12. Snow Leopard

    Assessment of the scientific rigour of RCTs on the effectiveness of CBT and GET for ME/CFS: a systematic review (2019) Ahmed et al

    The problem is the flogging neither killed the horse, nor proved that the flogging was a bad idea. A high quality study that focuses entirely on meaningful objective outcomes will (mostly) settle the debate. It may seem like a waste of time and money since we know the result, but...
  13. Snow Leopard

    In This Doctor’s Office, a Physical Exam Like No Other (NY Times 8 May 2019) - Commentry by Henrik Vogt

    Right. What is measured has to be specific and sensitive with regards to being part of a meaningful disease model.
  14. Snow Leopard

    Cases of Acute Flaccid Myelitis in Minnesota and other states

    It has been discussed in the literature for quite a while, so I'm not totally surprised.
  15. Snow Leopard

    Impedance, the biomarker you wouldn’t expect

    "the biomarker you wouldn’t expect" reflects the authors biases, but I found the article interesting (even as a student of physics) as I do with most of Paolo's articles. The diagrams in particular are helpful and were something lacking from the original manuscript...
  16. Snow Leopard

    The pathway from glandular fever to chronic fatigue syndrome, 2011, Moss-Morris et al

    The predictors that were "significant" at 3 months disappeared at 6 months, suggesting they are not relevant. "all or nothing" behavioural questionnaire answers could be interesting, but could also represent biases in participation, those who felt their illness was significant enough to...
  17. Snow Leopard

    Do ME symptoms fit with the faulty energy metabolism hypothesis?

    Yes, it is not a purely central process and nor is it purely delayed... The immediate effects are in the muscles used and these muscles are affected more in the subsequent days. I don't experience that at all (muscle weakness post-exam for example). I can experience stiffness, pain etc. if I...
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