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  1. Snow Leopard

    “Potentially harmful and old-fashioned chronic fatigue treatments under review” ABC Australia article and TV program

    I guess Dr Lloyd forgot to tell them about the study that he did that had a null result.
  2. Snow Leopard

    Why has 'persistent enteroviral infection' been dropped as a research strand in ME/CFS? (Jen Brea asking)

    The underlying cause(s) may be different, but there are common elements with other illnesses, though I agree most cases appear to be different from chronic viral illness. People with other neurological or autoimmune diseases who I have talked to personally often describe similar severe fatigue...
  3. Snow Leopard

    Simon Wessely Didn't Want His e-Mail On A Blog - Here It Is on Hole Ousia

    @Hole Ousia I apoligise for my speculation that you had prior beef with SW. I am curious as to which evidence you are referring to on long term harms of antidepressant usage. Specifically, evidence based on prospective studies. I know there is evidence of medium term reduction in 5-HT...
  4. Snow Leopard

    Simon Wessely Didn't Want His e-Mail On A Blog - Here It Is on Hole Ousia

    Simon Wessely's letter requesting a fresh review seemed reasonable. BMJ's news article not stating any of the reasons why the review was requested was odd and disappointing. Peter Gordon's request for transparency seemed reasonable. Simon Wessely's unwillingness to provide details was odd and...
  5. Snow Leopard

    Submission to the Scottish Parliament by Jonathan Edwards

    Who do you think? https://www.scotsman.com/news/capital-clinic-gives-hope-to-me-sufferers-1-931697 Edit I should be more specific - Alan Carson and Michael Sharpe have coauthored manuscripts before. This clinic was involved in recruiting patients for the PACE trial.
  6. Snow Leopard

    Submission to the Scottish Parliament by Jonathan Edwards

    All of the criticisms, presumably.
  7. Snow Leopard

    UK: Locations that offer CPET/VO2max testing

    My test was done in a university clinic. It depends on the setup, some recent equipment may automatically ramp the power up in almost continuous steps. Some equipment require the power to be ramped up manually in steps, 10-15w is common. However the protocol/rate of increase for athletes can be...
  8. Snow Leopard

    Why has 'persistent enteroviral infection' been dropped as a research strand in ME/CFS? (Jen Brea asking)

    One thing to note is that enteroviruses are fairly small and simple viruses, contrasted with herpes viruses like CMV and EBV that are large complex viruses with many genes, some of which are there to confuse the immune system. The fact that both can lead to the same illness is strange.
  9. Snow Leopard

    UK: Locations that offer CPET/VO2max testing

    One key aspect to note is that the CPET protocol for healthy people can differ from that used in ME/CFS studies, specifically the rate at which the power is increased. This can lead to less time on the bike, but also less precision of the data. Solent Sports Science Lab (mentioned above) says...
  10. Snow Leopard

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

    That's disappointing, I appreciate the effort you went to though! I put in an application last week, but haven't yet had a response saying they're reviewing the applications yet. (only the automated reply) Best of luck to everyone here who applied!
  11. Snow Leopard

    Why has 'persistent enteroviral infection' been dropped as a research strand in ME/CFS? (Jen Brea asking)

    I'm skeptical of the persistent infection hypothesis, at least for myself and a majority of patients. But I also can't discount,the handful of people who I know personally who are currently experiencing true remission - all of them used either antiherpes or combination antibiotic/probiotic...
  12. Snow Leopard

    What research do you want to see? (study ideas)

    Epidemiology in long term cohort studies - this way we can test the sensitivity/specificity of the different diagnostic criteria, estimate incidence, prevalence, duration, DALYs and even economic costs.
  13. Snow Leopard

    Why has 'persistent enteroviral infection' been dropped as a research strand in ME/CFS? (Jen Brea asking)

    Hmm. Some forms of GBS are motor only, especially in children, so the asymmetry seems to be most significant difference. edit: there is discussion of asymmetrical GBS: https://www.ncbi.nlm.nih.gov/pubmed/17122947 edit 2: Ventral Horn involvement in GBS...
  14. Snow Leopard

    Why has 'persistent enteroviral infection' been dropped as a research strand in ME/CFS? (Jen Brea asking)

    Acute flaccid myelitis aka paresis was the reason I turned up at the A/E. Long term I didn't recover hence the CFS diagnosis later. Long term outcomes of GBS (which certainly covers the symptoms in that list) suggest a substantial subset of patients suffer from long term fatigue. "Fatigue, pain...
  15. Snow Leopard

    Why has 'persistent enteroviral infection' been dropped as a research strand in ME/CFS? (Jen Brea asking)

    I'm increasingly thinking that all forms of acute flaccid paralysis/myelitis (and respiratory failure), including Poliomyelitis are in fact all forms of Guillain-Barré syndrome. The symptoms and long term outcomes are identical, the only difference is the underlying infectious trigger.
  16. Snow Leopard

    Who is included in the Mad Studies Project?

    This looks potentially interesting, but I worry that our views will be taken out of context. Patients are not opposed to, or somehow outside of conventional biomedical models. Likewise, when patients say CFS is "not psychological" they are not invoking mind-body dualism, they are not suggesting...
  17. Snow Leopard

    Reduced glycolytic reserve in isolated natural killer cells from ME/CFS patients: A preliminary investigation, Nguyen et al, 2018

    The problem is success on a pilot study isn't actually statistically valid to justify further research, it simply shows that such an experimental design is possible.
  18. Snow Leopard

    Michael Sharpe skewered by @JohntheJack on Twitter

    Hey, I'm a proud suffer of Can't Be Arsed Disease!
  19. Snow Leopard

    Stamina levels before ME/CFS?

    This thread likely has some selection bias, but it nonetheless shows that some of us had above average endurance or motivation.
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