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  1. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    Ok thanks for letting me know. Might try again later.
  2. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    It's too buggy for me. Had multiple times where it crashed when I tried to save changes. It's also so slow that editing takes 5-10x more time to do than in other programs.
  3. ME/CFS Science Blog

    'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]

    'You will contribute to the social scientific study of illness recovery stories posted to YouTube, developing conceptually innovative and politically vital research.' Weird. This almost sounds like a joke.
  4. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    Is it my computer/internet or is MEpedia really slow to load?
  5. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    Thanks I'll try to add some references and improve the text if energy permits. It would be good to have an example of a bad ME/CFS image and a good ME/CFS image clearly next to each other. Perhaps also a section on severe ME and a section that explains core ME/CFS symptoms such as PEM, POTS...
  6. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    https://thesciencebit.net/category/me-cfs/
  7. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    These sources might also be useful: How to Report with Accuracy and Sensitivity on Contested Illnesses - The Open Notebook Journalists_-How-to-Report-on-ME_CFS.pdf (meaction.net)
  8. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    Perhaps we should just try it then. If I understand correctly, MEpedia automatically stores older version so if we want to restore something from it we can always go back to copy it.
  9. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    All sound good to me. Depends a bit on the other MEpedia editors: will they revert big changes for example if we replace the current with the draft I posted above?
  10. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    I agree, it should best be rather short and refer to other more respectable sources that provide more info. I've quickly written something down based on the info that was already on the page and other ME/CFS factsheets and guidelines. ME/CFS Myalgic encephalomyelitis (ME), sometimes referred to...
  11. ME/CFS Science Blog

    The MEpedia Primer for Journalists

    Here's the link: https://me-pedia.org/wiki/Primer_for_journalists What is the best way to approach this? The text doesn't seem very wrong or inaccurate but mostly chaotic: some arguments are repeated in multiple subheadings etc.
  12. ME/CFS Science Blog

    Review Systematic review of fatigue severity in ME/CFS patients: insights from randomized controlled trials 2024 Park et al

    Short summary: They searched for RCT, removed those that were high risk of bias according to the Cochrane Risk of Bias tool 2 (RoB2) and converted all baseline fatigue scores of ME/CFS patients into a scale of 0 to 100 point. 60 RCTs with 7088 patients with ME/CFS were included in their...
  13. ME/CFS Science Blog

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Great to hear it is ongoing. Thanks for working on this.
  14. ME/CFS Science Blog

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    I think that would be the correct way to do this experiment. I believe the authors' significance testing is somewhat misleading as it only takes into account the variability (in the measured behavioural response) of the mice, not the variability (in IgG) of human participants. In the...
  15. ME/CFS Science Blog

    USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

    In the Netherlands they are planning to do a platform trials study for Long Covid. This is mentioned in the study led by Prof. dr. Anske van der Bom but unfortunately not many details are given. https://www.zonmw.nl/nl/artikel/nieuw-netwerk-brengt-samenhang-onderzoek-naar-post-covid
  16. ME/CFS Science Blog

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Any update on the letter regarding effort preference and EEfRT? Has a summary of the issues identified here already been sent to the NIH researchers? @andrewkq @EndME
  17. ME/CFS Science Blog

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    Thanks for the explanation @MelbME although I must admit that I still don't fully get it. If the problem is the large variation in mice behaviour, then I don't see how pooling the patient IgG into 3 groups would help to solve that. One might need a lot of mice and measurements to balance out...
  18. ME/CFS Science Blog

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    Can anyone explain why they pooled the IgG per subgroup? I would think that you get the most information if each participant's IgG was given to a separate mouse (if this is possible). Because that is the interaction that you want to test for with as many independent observations and their...
  19. ME/CFS Science Blog

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    Some of the figures such as figure 5 above note that they used 'BH adjustment' - so Benjamini-Hochberg adjustments. Unfortunately no exact p-values or effect sizes are given. In this study they used a control group, so it's quite interesting that their antibodies did not have the same effect...
  20. ME/CFS Science Blog

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    The data on mechanical and heat sensitive in the mice seems to have the clearest effect (shown in figure 5 below), one that was present even if you ignore the subgrouping they used. The effect on immobility and locomotor ability was only present in one of the three subgroups on day 1 (not on...
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