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  1. Sean

    News from Aotearoa/New Zealand and the Pacific Islands

    It is bizarro stuff. o_O
  2. Sean

    David Tuller: Trial By Error: My Letter about MUS to the British Journal of General Practice

    Oh, I don't trust them. That ship sailed and sunk a long time ago, in very deep water. (Somewhere near the good ship PACE, I believe.) Just think that a combination of carrot and stick usually works best. Don't get me wrong. I am enjoying the stick part. They earned it. :jimlad:
  3. Sean

    Request for comments: NDIS (Australian National Disability Insurance Scheme): evidence of permanency of ME/CFS with NHMRC interim guidelines

    They would have been screaming it from the rooftops, and rightly so. Instead they have had to downplay or ignore the lack of support from objective results. 'Definitive', one might even say. :whistle:
  4. Sean

    David Tuller: Trial By Error: My Letter about MUS to the British Journal of General Practice

    We do need to be careful about jumping the gun, and alienating people who are or could be on our side (or at least not hostile to us). Sometimes (sometimes) it really is just a relatively slow system working through the issue.
  5. Sean

    Request for comments: NDIS (Australian National Disability Insurance Scheme): evidence of permanency of ME/CFS with NHMRC interim guidelines

    Nice work. Thanks. PACE also showed that neither CBT nor GET increased workforce participation or reduced the receipt of benefits (social security/insurance).
  6. Sean

    Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

    If we could demonstrate significant bias in the grant review process, and that it comes from the psych/BPS crowd, that would be a big win. Also more ammo for wider debate about the lack of transparency and accountability in the peer review process.
  7. Sean

    Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

    One of the several steps in a typical back down by authorities is some version of: 'Well, we were partly right.'
  8. Sean

    Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

    Especially the type of CBT and GET they are 'offering'. Exactly. If they can't predict responders from non-responders then they have no understanding at all, and are just taking random potshots and hoping something hits whatever target they think they are aiming at.
  9. Sean

    USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

    If this is the best they can come up with after 30 years, they should resign. Very important point.
  10. Sean

    Psychology Today blog platform: "It's All in Your Head - The relationship between contested illnesses and psychiatric illnesses"

    Had minor surgery almost a year ago to open up the nasal passage. Doctors said it can take up to a year for everything to fully settle down structurally, and for normal sensations to return to the nose. If that is true for minor surgery, then it is true for more major surgery.
  11. Sean

    IiMER International Conference Week London 2019

    Thanks for that, Andy. :thumbup: Can you expand on that? Does it mean mechanical pressure?
  12. Sean

    Advocacy Action Alert: Senate Considers ME/CFS Funding Increase!

    Dear patients in the USA If you only ever contact your political representative about ME/CFS once in your life, this is the one to make the effort on. Thank you Signed Non-USA patient. :thumbup: :hug:
  13. Sean

    Whitney Dafoe Updates

    And those two messages are:
  14. Sean

    Beware creating a moral panic about antivaxxers Fiona Fox The Times 2019

    Have you ever seen a 3 month old baby, too young to be fully vaccinated yet, slowly dying over weeks from whooping cough (pertussis), just worn down by the sheer effort of endless body-wrenching spasms of coughing? It's a particularly horrible and distressing death. Imagine that scene played...
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