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  1. Sean

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I doubt any other health system is doing too well either.
  2. Sean

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    I fully expect exactly this sort of thing to be common, and that we are going to have to spend considerable time and energy policing and enforcing compliance. They will not give up their gravy train so easily. They are going to try every trick they can to keep it rolling right along.
  3. Sean

    Fundraising for UK ME charities in memory of Graham McPhee

    How long is this open for?
  4. Sean

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    CBT for CFS encourages people to gradually build up and resume regular daily activities, to identify and plan how to deal with any triggers that might cause symptoms to get worse – to learn how to manage and reduce the symptoms. The record's stuck... The record's stuck... The record's stuck...
  5. Sean

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    Surely it would be odd if CFS was the only illness not helped in this way. Even if that were true then it would seem like an important clue, not something to be waved away.
  6. Sean

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    A very clear statement on patients having the absolute right to decline such programs, without that prejudicing their status in the health & welfare systems, is essential.
  7. Sean

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    We are placed in an intolerable bind where we cannot give an answer that is both honest and safe. We have to choose. And even the 'safe' answers are still risky, because we had to lie, and one way or another that usually doesn't end well.
  8. Sean

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    Try removing the Facebook tracker in the URL (everything from the '&' on, to the right). This bit: ?fbclid=IwAR2gMSsxeBum1oCubLjfvvhnM2CPmcULSl9uCsxuxZcpSeyFqEOry8mkjiM
  9. Sean

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    We sure do. From where is the question. Given we are at start of this process, what do you think are the minimal requirements of any plausible idea/hypothesis? e.g. It must account for PEM.
  10. Sean

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    If that holds up then it is good news.
  11. Sean

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    We have to take our luck and opportunities where we find them.
  12. Sean

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    In particular, we emphasize that successful rehabilitation from CFS/ME does not indicate that the illness is not real. I note they use 'illness', not disease.
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