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  1. 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.
  2. 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.
  3. 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...
  4. 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...
  5. 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...
  6. 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.
  7. 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...
  8. 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.
  9. 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.
  10. 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...
  11. 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...
  12. 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...
  13. Snow Leopard

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    One of the comments: The guy recovered eventually though... Though maybe it was the physical activity that exacerbated the symptoms post-EBV in the first place...
  14. Snow Leopard

    frontiers in Pediatrics: Endometriosis as a Comorbid Condition in Chronic Fatigue Syndrome by Boneva, Unger et al 2019

    Case-control study... I guess this was overlooked as part of their previous population based studies.
  15. Snow Leopard

    Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?, 2019, Segal et al

    Funny coincidence, I remember a quack (homeopath) saying more or less the same thing - and I agreed. (I was 17 at the time) Of course I was doing almost nothing at the time and still had brain fog, constant headache etc. ¯\_(ツ)_/¯
  16. Snow Leopard

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

    From that link: A more recent prospective study in Germany found an (CC) allele frequency of 24%. So in both studies, the (reported) ethnicity is neither a highly sensitive nor highly specific predictor of having the gene and hence treatment results. The conclusion is clear: we should not...
  17. Snow Leopard

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

    When it comes to (medical) cures for disease, I have not seen any evidence to suggest that "race" or ethnicity have any effect, beyond access (and compliance) to high quality medical care in the first place.
  18. Snow Leopard

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    Which based on the reported concentration of 200 cells per microlitre means 10,000 cells...
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