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  1. Snow Leopard

    UK Parliamentary debate today - Thursday 24th January 2019

    Exactly RCT means two different things. In the case of PACE, it means randomised comparison trial.
  2. Snow Leopard

    Schoolboy, 14, struck down by ME during a football match – yet doctors dismissed his symptoms as him being a ‘lazy teenager’

    These sorts of articles are most often not written for the benefit of people with illnesses/disability, they're written so that able bodied people feel better about themselves...
  3. Snow Leopard

    Open Quality of life study

    Just because something is a "standardised" instrument doesn't mean it is reasonable or appropriate. Zero PROMs for example have been properly tested for acceptability, understandability, relevance/appropriateness to patients and so on. The fact is the construct validity of such measures have...
  4. Snow Leopard

    Relationship Between Exercise-induced Oxidative Stress Changes and Parasympathetic Activity in CFS - (2018) Polli et al

    The problem is that vagal activity cannot be directly inferred from HRV or HRV-High Frequency band, as both sympathetic and parasympathetic activity have an effect on the HF component. Differences between patients and controls could simply be due to poor matching between patients and controls...
  5. Snow Leopard

    Relationship Between Exercise-induced Oxidative Stress Changes and Parasympathetic Activity in CFS - (2018) Polli et al

    HRV is generally a poor choice for the measurement of vagal activity or parasympathetic/sympathetic balance, since it is affected by both... However the fact that TBARS did not change after exercise is notable. Previous studies found elevated TBARS after maximal exercise...
  6. Snow Leopard

    Why are the majority of pwME rarely mentioned?

    There is no "mild" ME, people should stop calling it that.
  7. Snow Leopard

    What could be done about the Science Media Centre (SMC) in the UK

    Really? I mean they're clearly a lobbying group, so...
  8. Snow Leopard

    News from Belgium

    It seems strange that they expect the biological research to be perfect while overlooking all the flaws in the psychological research, namely lack of specificity, sensitivity (when related to things like childhood trauma or allostatic load), lack of objective evidence of improvement etc. Seems...
  9. Snow Leopard

    Live vaccines and a wider effect

    I've spent some time trying to uncover how the DTP results may be spurious - different travelling patterns of parents, perhaps more likely to have deaths recorded due to increased health system participation. But the results have appeared in multiple regions and even in a randomised study, so I...
  10. Snow Leopard

    Anyone experience a numb feeling between toes on the sole side of feet?

    My big toe circulation issues are not affected by temperature (not Raynauds specifically) and are not at all normal at my age (early 30s)! I've also never been a smoker. My issues aren't between the 3rd and 4th toe, so may be a totally different problem.
  11. Snow Leopard

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    We/you are assuming they have the same ideological basis as us/you. They don't believe that there is an underlying objective disease, they believe that subjective perception of pain/fatigue/whatever is the illness and that subjective reporting of improvements necessarily represents improvement...
  12. Snow Leopard

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    Exactly. What you are recording is the output of an instrument, this cannot be assumed to be the same as the underlying phenomena. How a patient answers on a symptom questionnaire is not the same as the underlying experience of that symptom. Compared to voltmeters which have well-defined or...
  13. Snow Leopard

    Estimating Prevalence, Demographics and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning, 2018, Valdez, Proskauer et al

    That is an excellent point - the graph reflects cumulative incidence combined with lack of recovery. This can be modelled with Dismod etc too.
  14. Snow Leopard

    Anyone experience a numb feeling between toes on the sole side of feet?

    I've had a numb feeling at the bottom of my big toe for quite a while, in my case it is some kind of circulation issue as the toe on my other foot recovered after becoming very swollen after I stepped on a nail a few years ago.
  15. Snow Leopard

    Positive Psychology; Positive Thinking

    Confusing cause and effect...
  16. Snow Leopard

    Cambridge Handbook of Psychology, Health and Medicine (2007) with chapter on CFS from Chalder and Cairns

    No. The problem isn't merely conflation of mental disorders with CFS. They're talking about poor quality easily-biased research and claiming it is somehow generalisable/conclusive evidence.
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