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  1. InitialConditions

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    https://psp-me.co.uk/campaign-strategic-approach-mecfs-research/ The proposal (attached) can be supported via the 'Support the campaign' button on the above linked page.
  2. InitialConditions

    [Survey] Have your say on [UK] welfare benefits reform

    The new PIP Daily Living 4-point rule would mean 87% of PIP recipients with standard Daily Living would lose their awards. The figure is 13% for those with enhanced Daily Living. Not to mention these people would likely also lose their UC LCWRA awards.
  3. InitialConditions

    [Survey] Have your say on [UK] welfare benefits reform

    Form here: https://docs.google.com/forms/d/e/1FAIpQLSelDC00Dul6_PiiBEZrAPHgG0HFdp8x9YtpBw9LwFGmIOkhJQ/viewform
  4. InitialConditions

    NHS Greater Manchester Proposed ME/CFS, Long Covid service - Online workshops and survey

    "This is your chance to make your voice heard! NHS Greater Manchester is designing a brand-new integrated service for people with ME/CFS and Long Covid and they want to hear directly from you. This is a real opportunity to influence how care is provided across Greater Manchester - from diagnosis...
  5. InitialConditions

    Preprint A Digital Platform with Activity Tracking for Energy Management Support in Long COVID: A Randomised Controlled Trial, 2025, Hayes et al

    I don't know exactly how it works, but pre-prints are not yet typeset in the journal style, so it is common to upload the submission file and separate files for figures, but I'm sure you'd find pre-prints where the figures are inline.
  6. InitialConditions

    Preprint A Digital Platform with Activity Tracking for Energy Management Support in Long COVID: A Randomised Controlled Trial, 2025, Hayes et al

    That is deliberate. The paper is a pre-print so this will be how the journal expects the manuscript; usually they ask for figures as separate files or collated at the end of the document.
  7. InitialConditions

    Preprint A Digital Platform with Activity Tracking for Energy Management Support in Long COVID: A Randomised Controlled Trial, 2025, Hayes et al

    One of the co-authors, Natalie Hilliard, is listed as part of Physios for ME, but her first name isn't even spelled correctly, so that's not a great sign.
  8. InitialConditions

    Mestinon

    Did a beta-blocker help you? Propranolol 20 mg in the morning seems to help lower my HR but doesn't seem to do much else to help my OI (which isn't severe, but is still quite disabling during PEM). I may trial mestinon.
  9. InitialConditions

    Mestinon

    Do you have a PoTS diagnosis? Or dysautonomia / OI?
  10. InitialConditions

    Low-Dose Naltrexone restored TRPM3 ion channel function in Natural Killer cells from long COVID patients, 2025, Martini et al

    This has come from this group's research on ME/CFS, e.g., https://pmc.ncbi.nlm.nih.gov/articles/PMC8313851/
  11. InitialConditions

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    Merged thread [Radio segment] BBC Radio Cornwall covers ME/CFS and discusses the DHSC delivery Plan
  12. InitialConditions

    Mestinon

    Can you describe the "chest tightness"? I am wondering if it's the same as my "chest heaviness" that is one of my main symptoms of orthostatic intolerance. It feels as though there's a weight in my chest and that I need to take a deep breath (to the top of my breath).
  13. InitialConditions

    T3 treatment for hypothyroidism

    I got some bloods taken recently and had the same problem, so no folate reading. I don't know much about hemolyzed samples.
  14. InitialConditions

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Without going too off topic, I would think the chance of discovering an overall test or drug to treat long covid is essentially zero, because the group is so heterogeneous, even compared with ME/CFS. So in that respect, Paul is probably right.
  15. InitialConditions

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Ah, I hadn't seen that. The gun looks like it's an Airsoft gun or something similar.
  16. InitialConditions

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    https://www.livpost.co.uk/professor-paul-garner-was-delighted/
  17. InitialConditions

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    https://www.manchestereveningnews.co.uk/news/uk-news/this-explanation-long-covid-helped-31193899 New Paul Garner just dropped.
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