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  1. Snow Leopard

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    One point that might not have been made yet (I haven't been able to keep up with the discussion in this thread) is that this process isn't just about our patient group. It is a pilot programme and if successful, should in principle be used to revise or guide the development new meta analyses...
  2. Snow Leopard

    Analysis of Gender Differences in HRV of Patients with [ME/CFS] Using Mobile-Health Technology, 2021, Capdevila et al

    There are lots of confounding factors, unfortunately. HRV will never be a specific or sensitive biomarker.
  3. Snow Leopard

    Post-Exertional Malaise ... Related to Central Blood Pressure, Sympathetic Activity and Mental Fatigue in [CFS] Patients, 2021, Kujawski, Newton et al

    This study is a little strange in that there was no standardised challenge that may induce PEM. So the PEM reported was due to naturalistic variation in the participants day to day lives. But PEM isn't merely a binary experience, greater exertion tends to lead to worse PEM... That seems like a...
  4. Snow Leopard

    Elements of Suffering in [ME/CFS]: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected, 2021, Fennell et al

    There still seems to be too much focus on the psychological aspects (phase 4 "integration" is particularly problematic), and too little focus on the fact that the person may be suffering because many human needs are no longer able to be met due to illness. Some of these needs may be able to be...
  5. Snow Leopard

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I don't understand what you mean by this? Even if the remaining position is filled with people who have been too ill to work (or hold prominent volunteer positions in various organisations!) since their childhood (such as myself), this is still not much representation. One additional question...
  6. Snow Leopard

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    @Hilda Bastian Why is there no one in the group who doesn't have an impressive CV in lieu of the fact that they have been too ill to work for most of their life? By only including those who have not experienced the illness for themselves, or were only mildly affected and thus were still able to...
  7. Snow Leopard

    The placebo effect in inflammatory skin reactions: the influence of verbal suggestion on itch and weal size, 2015, Darragh et al.

    This is a classic and ubiquitous non-sequitur found in medical science. Self-reported symptoms is not the same as experienced symptoms but is almost always assumed to be the same thing.
  8. Snow Leopard

    Designing a questionnaire on ME/CFS onset

    This is misleading. The first is that not all vaccinations are injected - (eg nasal flu or oral polio, typhoid, rotavirus, cholera, adenovirus etc). The second is that I'd bundle 'other injection' under other medication/drug causes.
  9. Snow Leopard

    Does Functional Somatic Symptoms Measurement Differ Across Sex and Age? Differential Item Functioning in Somatic Symptoms.., 2021, Acevedo-Mesa et al

    It's funny how they often name questionnaires that focus on measuring mental disorders in a non-descript manner such as "Composite International Diagnostic Interview".
  10. Snow Leopard

    Covid-19 vaccines and vaccinations

    That is the study I cited in the post above and well, the claim they have discovered the reason is misleading at best...
  11. Snow Leopard

    Covid-19 vaccines and vaccinations

    @Jonathan Edwards Have you seen this? https://www.researchsquare.com/article/rs-558954/v1 I think the title is extremely misleading since no evidence of mimicry has been provided and a study already ruled out molecular mimicry due to the spike protein. I have previously proposed...
  12. Snow Leopard

    Psychosomatic symptoms questionnaire (PSQ-39): a psychometric study among general population of Iranian adults, 2021, Heidari et al

    An AUC of 0.78 is crap and will lead to a very high rate of false positives and negatives.
  13. Snow Leopard

    EXHAUSTION: A History, 2016, Schaffner

    Chapter 10 completely mischaracterises the experiences of ME/CFS patients and Nasim Marie Jafry in particular who was unaware that her work had been mischaracterised in the book until I told her about it. Nasim also had prior interactions with the author and tried to explain such experiences to...
  14. Snow Leopard

    The biology of coronavirus COVID-19 - including research and treatments

    The sensitivity and specificity of sniffer dogs for something like COVID is poor, I suspect it's promotion, is so that it can be used as a deterrent.
  15. Snow Leopard

    IDO2 gene mutations - SNPs

    Of the data that I have (for myself): rs10109853 C/C rs4736794 A/A ¯\_(ツ)_/¯
  16. Snow Leopard

    Study on the Relationship between the miRNA-centered ceRNA Regulatory Network and Fatigue, 2021, Yang et al

    While I encourage novel hypotheses, I don't find the hypotheses terribly compelling given the current evidence. I'd encourage the authors to conduct in-depth empirical studies if they are serious about the hypothesis. Unfortunately, in the narrative review, the authors haven't clearly...
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