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  1. InitialConditions

    FOI on the Delivery Plan 2025

    I think someone has been FOIing the wrong department. I don't know why they'd FOI the Committee on Standards in Public Life.
  2. InitialConditions

    UK Invest in ME conference 2025

    Some of these videos have <5 views. Why upload them to YouTube unlisted?
  3. InitialConditions

    Preprint Host control of latent Epstein-Barr virus infection, Schmidt et al., 2025

    Epstein-Barr virus (EBV) is a herpes virus that infects around 90-95% of the global population, and is associated with numerous autoimmune and neoplastic diseases. EBV persists in B cells as a life-long latent infection. Despite its relevance to disease development, the biological basis of host...
  4. InitialConditions

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Still can't find the actual report. All I can get is the press release (with an awful typo in the lede).
  5. InitialConditions

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    It's looking like we've been sold down the river again. Three years and we get some lousy NHS education modules and £200,000 NIHR funding — not even enough to fund a single trial. I feel sorry for all the patients who have put their energy and time into this. I left the CMRC/MERC PAG when this...
  6. InitialConditions

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

    Actually, I think this is exactly what happened. He convinced himself he was going to be ill for years and then he recovered after being introduced to a new way of thinking about his illness. That's probably a really powerful experience. He also happened to retire around this time, which...
  7. InitialConditions

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

    Garner is now retweeting Science Denier in Chief Toby Young claiming POTS is basically social contagion/hysteria and attention seeking.
  8. InitialConditions

    Lull: Designing Crip Pacing Technologies for Rest, 2025, Homewood

    Damn. I wish I understood what these words meant, especially the bronze casting jewelry making part — which seemed to come out of nowhere.
  9. InitialConditions

    Symptoms and objective signs of peripheral sensory neuropathy in POTS and correlations to gastrointestinal symptoms, 2025, Ekaman et al.

    Abstract Aim Postural orthostatic tachycardia syndrome (POTS) is a disorder with cardiovascular autonomic dysfunction where multiple and variable symptoms are common, including those from the peripheral and enteric nervous systems. We aimed to investigate subjective and objective signs of small...
  10. InitialConditions

    Approach to nursing diagnoses of people with myalgic encephalomyelitis / chronic fatigue syndrome: a qualitative meta-synthesis, 2025, Oter-Quintana

    What does that mean in this context? I'm mostly getting the typical academic jargon of university humanities and social sciences departments.
  11. InitialConditions

    United Kingdom: Action for ME's PRIME project - research infrastructure

    The MEA seem quite happy functioning like a large support group rather than a change-making national charity.
  12. InitialConditions

    United Kingdom: Action for ME's PRIME project - research infrastructure

    I was thinking this myself. I know with the PSP and DecodeME there are now established PPI members who I'm sure will want to continue working with Chris and co, but S4ME (members) should be involved where possible.
  13. InitialConditions

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Rebecca Tolin is one of the more prominent YouTube recovery / brain retraining people.
  14. InitialConditions

    United Kingdom: Action for ME's PRIME project - research infrastructure

    Well, a bit of good news for once. Probably worthy of its own thread. (Done)
  15. InitialConditions

    Trial Report REGAIN: A Randomized Controlled Clinical Trial of Oxaloacetate for Improving the Symptoms of Long COVID, 2025, Vernon et al

    Are these tests actually legit? I never know whether they're just pure pseudoscience or not.
  16. InitialConditions

    Exploration of Intersections and Divergences of Long COVID and Chronic Fatigue Syndrome, 2025, Kouyoumdjian et al

    Yes, they've taken the ICC PENE critera (5 items) and just completely butchered them so that they become about 'tiredness'. Just bizzare. Why take the most strict/restrictive diagnostic criteria and then water them down? :confused:
  17. InitialConditions

    Exploration of Intersections and Divergences of Long COVID and Chronic Fatigue Syndrome, 2025, Kouyoumdjian et al

    Yes, I suppose you could look at it that way. I could have just written the first paragraph about the anomalously high prevalence rate in controls and then stopped! That probably would have been better!
  18. InitialConditions

    Exploration of Intersections and Divergences of Long COVID and Chronic Fatigue Syndrome, 2025, Kouyoumdjian et al

    I think this is clickbait. It's a grandiose statement going against conventional wisdom (that long covid is associated with ME/CFS) despite being based on an extremely low powered observational study.
  19. InitialConditions

    Exploration of Intersections and Divergences of Long COVID and Chronic Fatigue Syndrome, 2025, Kouyoumdjian et al

    I assumed the scoring system was their own invention. It's certainly nothing to do with the ICC. Now wondering if it's based on De Paul. If it is, they've not mentioned or even referened it at all.
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