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  1. Sean

    Preprint Charting the Circulating Proteome in ME/CFS: Cross System Profiling and Mechanistic insights, 2025, Hoel, Fluge, Mella+

    Was told once by a senior researcher in materials science that when he gets a paper to read he goes straight to the methodology section, and doesn't read the full paper until he knows it is worth reading. Said it saved him a lot of time.
  2. Sean

    Post-COVID-19 syndrome in children and young people: awareness among paediatric trainees in South Wales, 2025, Ahmed et al

    Indeed. The best way to clear muddied waters is to stop stirring it up.
  3. Sean

    Healthcare experiences of young people with CFS/ME in their own words, 2025, Watson & Segal

    A very tightly circled bunch of wagons indeed.
  4. Sean

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    "Adjustments by Open-OH:An SBRI follow-on funding to develop an evidence based interventions [sic] for Mental Health." Anybody need more evidence about what is really happening here? It is beyond clear that the government still happy to treat ME/CFS, et al, as a psycho-behavioural problem, to...
  5. Sean

    Impact of COVID-19 & 2021 NICE Guidelines on Public Perspectives Toward ME/CFS: Twitter Analysis, 2025, Khakban et al (Jason Busse)

    Dr. Jason Busse has established multiple connections to the insurance industry through his clinical practice, research, and advisory roles: Enough said. :grumpy::thumbsdown:
  6. Sean

    I'm able to exercise but am still disabled

    After more than 40 years of dealing with it all I still don't know what to say when somebody says 'you are looking good/well', when in reality I can barely stand and am heading directly home to crash. :confused:
  7. Sean

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    That makes a lot of sense. Might explain why – at least for me – getting into action is hard, but continuing it at least somewhat easier, leading to both appearing (relatively & temporarily) normal once moving, and also easily over estimating how much I really can continue the activity without...
  8. Sean

    I'm able to exercise but am still disabled

    I have not lost strength, beyond normal expected for my age (early 60s). I have lost stamina, and nothing I have tried brings it back. There is a hard ceiling. It would not be surprising if some deconditioning was going on for some patients, mainly at the severe-very severe end of the spectrum...
  9. Sean

    What advances in Covid vaccines are on the horizon?

    Wasn't there some work published in the last 6-12 months showing that the additional benefit of updated vaccinations for Covid was becoming less with each generation of vaccine? Something about the immune response was becoming less and fading faster? Don't know if that is normal pattern for...
  10. Sean

    Collecting papers on Evidence Based Practice for ME (plus distinction from FND)

    Be careful using the term 'unmanaged', as that gets used to open the door to claims that 'managed (i.e. treated)' patients do better. I take your point, just suggesting be careful about how you phrase it.
  11. Sean

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

    I have little doubt that one day the real story will come to the fore, more or less. But also have little doubt that for the victims, or their surviving loved ones, it will be cold comfort. Just way too little, way too late.
  12. Sean

    Hypothalamic-pituitary-adrenal Axis in Patients Presenting to Psychosomatic Medicine with Fatigue, 2025, Matsubayashi et al

    Some years back the wife of a friend of mine was having all sorts of health troubles, and was bundled off to the psychs. Long story short, eventually somebody did some appropriate (and standard, widely available) testing and it came back positive for a specific and well known gland problem...
  13. Sean

    Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

    Not sure that is where the problem lies.
  14. Sean

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

    This is the most important point about the political angle in ME/CFS: the BPS club could not have got away with it, for so long, and continue to do so, without the sustained support and protection from the rest of the power and governance structure. Which is a huge chunk of the reason those...
  15. Sean

    'Three best' questions to ask GP if they ignore you

    In fairness to the modern healthcare system, that probably catches the vast bulk of known and (more-or-less) understood serious problems. Not so well known and understood, on the other hand.... This. Though there is the issue of how well doctors and researchers are using existing knowledge...
  16. Sean

    Impacts of the 2024 change in US government on ME/CFS and Long Covid

    Which is exactly the sort of professional irresponsibility and cowardice that has allowed this shitfest to go for so long.
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