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  1. InitialConditions

    Oura Ring 4

    I have an Oura 3. The battery life has recently degraded, which is a known issue after 2+ years. I have read that they might replace it for free. Interested to see your HRV data.
  2. InitialConditions

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

    I can't get archive.ph links to work these days. I'm not sure if the site is down here in the UK or whether it's something in my setup. I use 12ft.io to view these paywalled articles.
  3. InitialConditions

    Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines

    Closing tomorrow (Aus time). Can be completed in around 10 mins, apparently.
  4. InitialConditions

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    It's an estimate based on the numbers in England diagnosed with the ICD-10 code G93.3 (Postviral and related fatigue syndromes), which includes ME/CFS, based on analysis of hospital data (not GP records). The study hasn't attempted to disentangle the known problems with misapplication of...
  5. InitialConditions

    UK Long Covid Clinics

    I'm not aware of anything of use in Liverpool (worth traveling 300 miles for).
  6. InitialConditions

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    There seems to be some confusion about whether the 404,000 figure is for the UK or just England. I believe it's for the UK, so this article would need correcting.
  7. InitialConditions

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

    Yes, it's good that they've decided to publically challenge funders on this.
  8. InitialConditions

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

    There is the opportunity to support this proposal by signing an open letter hosted by Organise Network, here: https://organise.network/actions/petition-a-proposal-for-an-me-cfs-long-c-xWkB_pcn/saf/take-action?utm_source=share&utm_medium=clipboard&utm_campaign=505a358c-8a1d-48ff-b55c-847346df5fe9...
  9. InitialConditions

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

    Additional documents: (i) Letter from ME researchers to funders (ii) Letter to MRC and NIHR leadership (iii) Strategic Research Funding - Parliamentary Briefing
  10. 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.
  11. 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.
  12. InitialConditions

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

    Form here: https://docs.google.com/forms/d/e/1FAIpQLSelDC00Dul6_PiiBEZrAPHgG0HFdp8x9YtpBw9LwFGmIOkhJQ/viewform
  13. 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...
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. InitialConditions

    Mestinon

    Do you have a PoTS diagnosis? Or dysautonomia / OI?
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