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  1. Sean

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    The BPS club know exactly what they are doing. They are trying to delay and block, wear us down, and then claim things have moved on since NICE, IOM, etc, that they now have new research since then that backs their position and which needs to be taken into account. Blah blah blah. Throw in...
  2. Sean

    UK: Aberdeen Uni: Major new study aims to increase understanding of fatigue

    That is going to be a major issue, I think: How PEM is defined and assessed. I seriously doubt new patients in particular are going to have enough experience of PEM to understand the question, and the potential implications for their health care. And that will be ruthlessly exploited by the...
  3. Sean

    Influence of CFS Codiagnosis on the Relationship between Perceived and Objective Psychoneuro-Immunoendocrine Disorders in Women w/FM, 2023 Otero et al

    ...perceived health parameters do not detect differences, when objective neuroimmunoendocrine parameters related to stress, inflammation, pain, and fatigue are used,... In other words, the measures of subjective perception were, once again, falsified. They cannot be relied on to deliver a...
  4. Sean

    UK: Aberdeen Uni: Major new study aims to increase understanding of fatigue

    I fear that research is all going to lumped under 'fatigue' and its consequences. Getting ME renamed Chronic Fatigue Syndrome was one of the greatest propaganda coups of all time, and a complete disaster for patients. It is likely to take decades to unravel and correct, depending on how well...
  5. Sean

    The Leipzig Treatment Program for Interdisciplinary Diagnosis and Therapy of Neurocognitive Post-COVID Symptoms 2023, Hasting et al

    Made some patients report feeling a little better emotionally, with no meaningful impact on any other measure, no specific relationship to the condition being studied, and the result being very plausibly explained entirely by known generic non-therapeutic confounders in this type of research...
  6. Sean

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I copied this from somewhere, don't remember where: Type I errors (false positives) = reporting an effect that doesn't exist. Type II errors (false negatives) = failing to report an effect that does exist. Specificity is the measure of the rate of Type I errors. Sensitivity is the measure of...
  7. Sean

    News from Australia

    This Australian is recently updated for Covid and flu, and continuing to mask when out. :thumbup:
  8. Sean

    How long before the misery of ME is taken seriously? and Money’s the motive for calling ME a myth - Sophie Palmer

    In fairness, at the practical clinical level there is not much more they can do. But it is a serious limitation.
  9. Sean

    ME/CFS advocacy successes in Germany

    This is good to hear. Hope it continues improving for our friends in Europe. :hug:
  10. Sean

    Thesis Exploring overcontrolled personality traits in individuals with fibromyalgia and chronic fatigue syndrome, 2023, Horton

    Overall, the findings were promising but further research is needed to understand if these improvements remain longer-term. After thirty-five years of dominance the psycho-behavioural approach has yet to deliver anything more than 'promising findings that need further research (funds)'. Enough...
  11. Sean

    A new consensus? - ME/CFS skeptic blog

    Thanks for this, @ME/CFS Skeptic. One point: Don't know about the Norwegian trial, but in PACE the version they used was not pacing as generally understood and used by the patient community. It isn't a useful result in either direction. I think we can. Any further indulgence in this kind of...
  12. Sean

    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    Preventing researchers and clinicians from preying upon desperate patients is one of the main reasons ethics committees came into being in the first damn place. :mad:
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