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  1. Sean

    Profiling hypermobile Ehlers-Danlos syndrome (hEDS): factors in health and wellbeing with chronic conditions and... 2025 Foster et al

    «There are no known treatments. Lets make them stop acting sick, that will make them us feel better.»
  2. Sean

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    Doctors like to consider themselves some of the biggest smartest toughest truth tellers in this world. And in fairness they often do have to deal with and tell patients some pretty harsh truths. But they also squeal and whine louder than anybody when they get told some hard truths about...
  3. Sean

    United Kingdom: Science Media Centre (including Fiona Fox)

    Should a Science Media Centre even exist?
  4. Sean

    Mind and Body in the Guardian again

    Correct. The power of mind over matter is the most potent and seductive myth of them all.
  5. Sean

    Mind and Body in the Guardian again

    If you silly lowly patients insist on continuing to be sick, and have a crap life, after we experts have told what is wrong and how to fix it, then it is your fault. When you abandon methodological rigour and falsification, the world is your oyster!
  6. Sean

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

    I am taking bets on how long before attendance at JFK Jr's proposed wellness centres becomes compulsory for chronically disabled and sick, and how those attending will be put to (unpaid) work for private corporations as part of the, um, re-education process. This is not going to end well. Don't...
  7. Sean

    Review Exploring rest advice in fatigue interventions in rehabilitation among adults with long-term conditions:... 2025 Hettinga et al

    standardisation of rest in fatigue interventions People should rest when they need to. Nothing more, nothing less. This obsession with 'standardising' everything is half the damn problem.
  8. Sean

    Managing Energy, and Shaping Care: Insights from Adults with [ME/CFS] Through Co-Production Workshops, 2025, Thornton+

    Point taken. OTOH, it is the responsibility of the pros to do robust assessments. I don't take what patients say at face value either. I have learned the hard way how easily we all can fool ourselves. Me included.
  9. Sean

    Psychology Today: In Search of a Coherent Understanding of ME/CFS and Long Covid, Jake Hollis

    No fundamental difference to this, IMHO: https://en.wikipedia.org/wiki/The_Secret_(Byrne_book) Sold over 30 million copies, more than $300 million in sales, and also made into two films. The only reason this toxic drivel fantasy persists throughout the ages is because enough people – and a...
  10. Sean

    Associations Between Self-Rated Health and Mortality in the Norwegian Women and Cancer (NOWAC) Study,2025, Killie et al

    Of course a bajillion years of evolution has prepared us for the early intuitive, less overt and specific, warning signs of approaching health trouble. It is bizarre to me that anybody would think otherwise, and devote their time to boldly declaring these alerts to be both a false foreboding...
  11. Sean

    Managing Energy, and Shaping Care: Insights from Adults with [ME/CFS] Through Co-Production Workshops, 2025, Thornton+

    A recent systematic review highlighted significant shortcomings in activity pacing interventions for ME/CFS, noting that they lacked rigour, were brief, and did not follow guidelines or integrate recommended technology, limiting their relevance for modern energy management. And then proceeds to...
  12. Sean

    Psychology Today: In Search of a Coherent Understanding of ME/CFS and Long Covid, Jake Hollis

    A fairy tale. The Narrative Rules All. An entire profession, even. (With some honourable exceptions.)
  13. Sean

    Review Selective outcome reporting in trials of behavioural health interventions in health psychology & behavioural medicine journals, 2025, Matvienko-Sikar

    Wessely. https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/ In an email exchange with Julie Rehmeyer, in 2016, he also said this: Simon Wessely, president of the UK Royal College...
  14. Sean

    Assessment of psychosocial aspects in adults in post-COVID-19 condition: the EURONET-SOMA recommendations (...), 2025, Salzmann, Fink et al

    It is becoming so. ME/CFS was just the trial run for them to test out how far they could get away with it. Turns out it was quite a long way, and is ongoing.
  15. Sean

    BACME position paper on the management of ME/CFS, 2020, updated 2022 - discussion thread

    Well said, @Nightsong. They are utterly disingenuous and self-serving, from start to finish.
  16. Sean

    Review Chronic pain, fibromyalgia, and long COVID, 2025, Braun

    There is a growing scientific controversy And people like you are going to make damn sure there is.
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