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  1. Snow Leopard

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

    "roughly 2.8 million" is only a guess because it fails to account for demographics, but 0.8% was the pooled prevalence of "clinically assessed" cases worldwide in this systematic analysis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3616604/ I'd expect the USA to have lower prevalence due to...
  2. Snow Leopard

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    I don't necessarily agree with Valerie's points, but is definitely a conversation we need to have and I've been thinking about this issue for years - the overall message, how to accurately represent the diverse views in the community effectively and so on. A lot of people look at the diversity...
  3. Snow Leopard

    Australia’s NHMRC ME/CFS Advisory Committee draft report released for public consultation

    If patients with post-cancer fatigue, post-polio and post-(select other neurological conditions) suffer from PEM, they may well have the same condition as us.
  4. Snow Leopard

    Mum says she's 'cured' of crippling health condition [ME] thanks to dieting secret [organic food]

    You vampires gotta be careful where you source your blood!
  5. Snow Leopard

    Cases of Acute Flaccid Myelitis in Minnesota and other states

    Indeed, that is the real question "What's keeping them from the same conclusion?" Similar outbreaks in Japan were mostly attributed to EV-D68 (the rest of the cases were attributed to Guillain-Barré syndrome). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5850449/
  6. Snow Leopard

    School Functioning in Adolescents With Chronic Fatigue Syndrome, 2018, Knight et al

    The high SES and substantially above average IQ of the participants suggests participation biases in studies like this one.
  7. Snow Leopard

    Central sensitization: a matter of concern

    The CNS sensitisation demonstrated was short term and specific to the nerve(s) stimulated due to the initial injury. They didn't demonstrate widespread, long term (months to years) increased CNS sensitivity throughout the body, which is what most people now mean when they say central sensitisation.
  8. Snow Leopard

    A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

    Unblinded clinical intervention relying on subjective outcomes and no comparison group = evidence that cannot be generalised. Most statisticians chuckle when reading things like this. I can't (quickly) figure out who performed the statistical analysis on that study though...
  9. Snow Leopard

    ‘It’s the unknown’ – understanding anxiety: from the perspective of people with multiple sclerosis (2018) Chalder et al

    Maybe they reached this conclusion because it matched their life experience, which is to say they don't suffer from these symptoms all the time!?!
  10. Snow Leopard

    Central sensitization: a matter of concern

    "Central sensitisation" is code for: there is something wrong in the brain that is amplifying the perception. The implication is the perception is inaccurate. It is a hypothetical concept that dates back centuries. The irony is there are no demonstrable biological models for central...
  11. Snow Leopard

    When a Placebo Is Not a Placebo: Problems and Solutions to the Gold Standard in Psychotherapy Research (2018) Blease et al.

    You can't. That's why non-pharmacological studies cannot be considered Randomised Control Trials, because there is no true control group. They should instead be refered to Randomised Comparison Group Trials.
  12. Snow Leopard

    A general thread on the PACE trial!

    Presumably no stratification was possible due to small sample size?
  13. Snow Leopard

    Their pain is real – and for patients with mystery illnesses, help is coming from an unexpected source

    First of all, there are selection biases against that - most brain diseases mean the offspring is not viable. Secondly, such failure modes would present in a specific way - namely have distinct signs that the failure is mental.
  14. Snow Leopard

    A general thread on the PACE trial!

    For a general overview of randomisation techniques, you may want to read this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136079/
  15. Snow Leopard

    A general thread on the PACE trial!

    It might explain more than we realise. Clinic reputation may very well make a difference, at least in the age of the internet and/or peer support groups.
  16. Snow Leopard

    Central sensitization: a matter of concern

    I thought that was a rhetorical question by Chrisb!?!
  17. Snow Leopard

    Central sensitization: a matter of concern

    Yes, most of the research suggests there is no consistent evidence for "central sensitization" of pain in ME or CFS patients.
  18. Snow Leopard

    There were not many ME/CFS research papers published in 2018 in comparison to many conditions

    Where did you get the idea that Mark was ill with ME/CFS? Those links suggest he is an active researcher.
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