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  1. Snow Leopard

    ‘What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement in research,2019,Staley

    The paper discusses the rational for a short 3-4 hour training session and some of the communicated responses, however doesn't really discuss in much detail about the specific content of the training such that someone else could replicate it...
  2. Snow Leopard

    Mitochondrial complex activity in permeabilised cells of chronic fatigue syndrome patients (2019) Tomas, Brown, Newton, Elson

    That's the Nobel prize winning question, but the authors specifically mention this paper: https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-8-93 Which along with the other 2 day cpet papers and related findings in exercise physiology provide clues, at least in my...
  3. Snow Leopard

    Trial By Error: And Another Prebuttal…

    Oh sorry, my mistake.
  4. 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

    The notable part about all this is well, short walks don't lead to improved fitness. Either short intense activity (to build VO2max), or prolonged exercise just below the ventilatory threshold (to increase endurance) is required for improved fitness. If you are reporting substantial benefits in...
  5. Snow Leopard

    Psychology & Health: Perfectionism and beliefs about emotions in adolescents with chronic fatigue syndrome and their parents (2019) Chalder et al.

    The parental associations are likely due to participation biases, namely demanding parents are more likely to have children participating in such studies because they want answers. The noteworthy part is the bias applies to the parents, compared to biases of patient participation and response as...
  6. Snow Leopard

    Professor Crawley BPSU study - Chronic fatigue syndrome (CFS) Severe children Feb 2019 - 2020

    The problem extends to the followup, namely loss to followup and related biases in the case of the GP who enrolled the patient into the study was not helpful, or worse...
  7. Snow Leopard

    Trial By Error: And Another Prebuttal…

    Sharing widely is not likely to get an article retracted and is likely to be counter-productive. Sharing with prominent people in authority who may be able to leverage a correction on the other hand can be helpful...
  8. Snow Leopard

    Professor Crawley BPSU study - Chronic fatigue syndrome (CFS) Severe children Feb 2019 - 2020

    This study could be quite valuable if done correctly, but won't be because the people running the study don't bother to listen to patients when it comes to study design...
  9. Snow Leopard

    What's in a name? Change to Ramsays?

    I think you missed my point. Yes they have a policy. I'm saying that policy does not meet patient needs in all cases. I'm saying we shouldn't be trapped in bureaucratic hell because they didn't bother to ask us before making a policy. We don't have a name like SEID [Ramsay], we have an even...
  10. Snow Leopard

    Prescribing for patients with chronic fatigue syndrome, by Bhatti & Bhatti, Feb 2019

    Yet another narrative review recommending SSRIs, this one notably does not mention any references. The reason for the lack of references is because all double blinded studies of SSRIs for CFS patients failed to show any benefit for any symptoms including depressive or anxiety symptoms. I don't...
  11. Snow Leopard

    Sweden: Acceptance & Commitment Therapy for ME/CFS – A feasibility study, 2019, Jonsjö et al

    Wouldn't that be an open skull? I thought the problem with open minds is they have a tendency to fill up with trash.
  12. Snow Leopard

    Golden hour (/month)

    I think my previous response was badly worded, I mean we don't have serious winter here, like you have in many parts of the USA. (I hear there were even snow storms in California!) I live in South Australia, it never snows where I live.
  13. Snow Leopard

    Article in Aeon-How the body and mind talk to one another to understand the world--Sarah Garfinkel

    Since Jonathan didn't have a go, I will try. Phantom limb phenomena relates to the fact that the mind (as a result of development of a young organism) builds up a model of the limb and this is used as a comparative basis for proprioception (including effort perception) in general. This is one...
  14. Snow Leopard

    What's in a name? Change to Ramsays?

    The argument against naming diseases after people is based on stigma, whether the name leads to confusion about etiology etc. Those arguments don't necessarily apply to the argument that ME should be renamed as Ramsay disease. Secondly, if the names proposed by various health authorities...
  15. Snow Leopard

    Relationship btwn CFS, burnout, job satisfaction, social support & age among academics at a tertiary institution (2019) Coetzee et al

    This doesn't prove that the conditions are similar, it proves that the questionnaire lacks specificity. Which is something that patients frequently mention when filling out such questionnaires (and often ignored by researchers).
  16. Snow Leopard

    Golden hour (/month)

    Not really, no. But we don't have serious winter here like in the USA.
  17. Snow Leopard

    Altered Erythrocyte Biophysical Properties in Chronic Fatigue Syndrome, 2019, Saha, Davis, et al

    Brenu et al note no difference in deformability using a different methodology. Saha et al note that some patients were taking various medications such as LDN, Rituxan, Vitamin D etc and this could well affect the results, especially given the small sample size. Secondly, no sensitivity of...
  18. Snow Leopard

    Cognitive-behavioural therapy v. mirtazapine for chronic fatigue and neurasthenia: randomised placebo-controlled trial (2008) Stubhaug

    Both the Mirtazapine + CCBT and CCBT + Mirtazapine groups, as well as the Placebo + CCBT and CCBT + Placebo should have similar results at 24 weeks unless the study suffers from short term biases. The reductions in the Fatigue Scale (Chalder) score at 12 weeks were small and not of clinical...
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