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  1. Snow Leopard

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    As Jonathan said, patients have an inherent interest in whether treatments work. This is not a conflict of interest. There is no primary or secondary gain in this case.
  2. Snow Leopard

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    She knows it's a magnificent statement. First and foremost, she's been a 'consumer' advocate in the medical field for decades.
  3. Snow Leopard

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center, Lipkin

    Has anyone heard anything back about the formation of the patient advisory committee which took applications back in June/July 2018? http://microbediscovery.org/2018/06/22/applicants-needed-for-columbia-mecfs-research-center-community-advisory-commitee/
  4. Snow Leopard

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    I'd just like to point out that the placebo effect is much more limited and specific than the range of biases that can affect subjective self report outcomes. A "placebo controlled trial" is blinded to control for more than just the placebo effect.
  5. Snow Leopard

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    I don't believe they will have a problem with Basian's blog. It wasn't just what Coyne was blogging about, there were a few incidents where his behaviour was problematic...
  6. Snow Leopard

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    Yes, the problem with the CFQ is how the questions are framed, it is a short term "how are you feeling" measure, designed to be as easily biased as possible.
  7. Snow Leopard

    David Tuller: Trial By Error: HRA Report Does Not Vindicate PACE

    Yes, as I said, he was the director of the clinic (and Clinical Trials Unit), but didn't do the database design/management himself. The bit you left out of the quote is the person responsible for randomisation, database design and management (Dr Tony Johnson).
  8. Snow Leopard

    David Tuller: Trial By Error: HRA Report Does Not Vindicate PACE

    He ran one of the clinics where the interventions were carried out, he wasn't directly involved with the design or organisation of the trial, though I'm sure he was asked for advice...
  9. Snow Leopard

    Trial By Error: And Another Prebuttal…

    No, "reduced reassurance" relates to the reduction of a specific behaviour, namely seeking reassurance during situations that generate anxiety. In the context of health psychology, it would be about reduced seeking of medical opinions related to health anxiety.
  10. Snow Leopard

    Trial By Error: And Another Prebuttal…

    "reassurance seeking behaviour" Example of use of "reduced reassurance" (slide 68): http://depts.washington.edu/hcsats/FCAP/resources/Modular%20CBT%20for%20Anxiety%20Disorders.pptx
  11. Snow Leopard

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Questioning the wisdom of her PhD supervisor shows genuine courage unlike another mostly well-reasoned commenter of Bad Science...
  12. Snow Leopard

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    It makes you wonder though, in principle, if they treat different things, the effect should stack. We know it doesn't as the crossover shows no effect (crossover was uncontrolled in PACE trial, but still no effect).
  13. Snow Leopard

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    I'd imagine that whenever the topic of the quality of the PACE trial comes up, Ben Goldacre mysteriously has to excuse himself to go to the bathroom.
  14. Snow Leopard

    Use of antidepressants for/with ME/CFS?

    SSRIs are recommended in spite of the lack of evidence from randomised control trials for any symptom, including depression as I said. It is merely (falsely) assumed that because it works for people without CFS, then it will work for people with CFS.
  15. Snow Leopard

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    The analysis plan was suddenly changed when the FINE trial revealed null results. This is not a coincidence.
  16. Snow Leopard

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    Basically, the establishment supporting itself. It's hard to conduct a review if you don't actually understand or engage with the specific issues at stake...
  17. Snow Leopard

    Impairments in cognitive performance in chronic fatigue syndrome are common (2019) Newton et al.

    One of the problems is selection bias. Participation in studies like this tends to be skewed towards people with above average (pre-illness) IQs and hence claims about normality or lackthereof is questionable. The most valid methodology would require prospective participants before they become...
  18. Snow Leopard

    "Body Reprogramming: Patient guide for recovery using the Hyland model"

    The problem with machine learning is that it isn't very useful with limited range of useful data. As Trish said, GIGO... Studies that rely primarily on questionnaires are junk, period. It's clear they want to make generalisations without any evidence...
  19. Snow Leopard

    Impairments in cognitive performance in chronic fatigue syndrome are common (2019) Newton et al.

    An interesting hypothesis would investigate whether PEM related cognitive deficits are associated with short term alterations in blood volume and/or blood flow in the brain...
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