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  1. InitialConditions

    DecodeME in the media

    Science Media Centre (featuring Sour-Grapes Carson, of course): https://www.sciencemediacentre.org/expert-reaction-to-unpublished-preprint-on-the-decodeme-genome-wide-association-study-of-me-cfs/
  2. InitialConditions

    Criticisms of DecodeME in the media - and responses to the criticisms

    Initial posts have been moved from DecodeME in the Media **************************************************************************** Science Media Centre (featuring Sour-Grapes Carson, of course)...
  3. InitialConditions

    DecodeME in the media

    Financial Times: https://www.ft.com/content/b82711ca-0842-4e73-9475-52435997e349
  4. InitialConditions

    Action for ME (UK) fundraising

    I have donated to IiME before via fundraisers and sponsored events. Being volunteer-led means all money raised goes to research but it also means they are stuck as a small charity and IMO they really need help to overhaul their identity/media. For historical reasons they also do not seem to...
  5. InitialConditions

    Effectiveness of a personalised self-management intervention for people living with long covid (Listen trial), 2025, Jones et al

    Follow-up paper on cost-effectiveness: https://onlinelibrary.wiley.com/doi/10.1111/hex.70357 What a giant waste of resources.
  6. InitialConditions

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

    I think the last direct link was probably when BACME was chaired by Gabrielle Murphy, but she stepped down a few years ago.
  7. InitialConditions

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

    That depends what you mean by 'BPS'. BACME was chaired by Esther Crawley back in the day. I don't think there are direct links now, but I suspect several members, particularly those in London, Bath, Oxford and Bristol, have at some stage worked with one of Wessely, Crawley, Sharpe, Miller...
  8. InitialConditions

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

    I've just listened to this segment. Charles wastes valuable time talking about historical minutiae of ME in Scotland in the 1980s and ends up completely failing to answer the question about the Delivery Plan. With all due respect to Charles, this isn't good enough. No one listening needs to know...
  9. 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.
  10. InitialConditions

    UK Invest in ME conference 2025

    Some of these videos have <5 views. Why upload them to YouTube unlisted?
  11. 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...
  12. 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).
  13. 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...
  14. 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...
  15. 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.
  16. 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.
  17. 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...
  18. 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.
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