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  1. Sean

    Best chopping tool/food prep gadget?

    Been having more than the usual gastro trouble for a few months. Long story short, I now have Barrett's esophagus to add to my fascinating collection of medical labels, and a regular gastroscopy to add to my calendar. So I recently bought a hand blender, and started pureeing whatever I could...
  2. Sean

    Medications for Immune Deficiency: Intravenous immunoglobulin, Inosine pranobex, Hydroxychloroquine

    Do it. Don't waste your life, or allow to be wasted by idiots like this.
  3. Sean

    Long COVID – One Year On 2022 Timothy Meagher

    However, other symptoms such as dys-pnea, chest pain and anosmia are common in Long COVID, but rare in ME/CFS. And multiplicity of symptoms is a striking feature of Long COVID; in contrast, those of ME/CFS are more limited. In fact, for this cohort, Long COVID more closely resembles Postviral...
  4. Sean

    Trial Report Mismatch between subjective and objective dysautonomia, 2024, Novak, Systrom et al

    One of the more shocking discoveries in my early journey through the medical literature was just how weak, to the point of non-existent, is 'validation' of questionnaires. Basically seems to be using them a few times and reporting that in the journals. After that they are effectively given the...
  5. Sean

    Efficacy and Acceptance of Cognitive Behavioral Therapy in Adults with Chronic Fatigue Syndrome: A Meta-analysis, 2024, Maas genannt Bermpohl et al.

    It is usually the mediocrities that do the destroying. It is the one thing they are not mediocre at. I wish that was a joke.
  6. Sean

    Earseeds, Acuseeds

    Very good article. One small error: My mum graduated from medical school in 1984, the same year that ME was joined by a second name - chronic fatigue syndrome (or CFS). The CFS label was formally introduced in March 1988 with the publication of the Holmes criteria. According to PubMed there is...
  7. Sean

    Efficacy and Acceptance of Cognitive Behavioral Therapy in Adults with Chronic Fatigue Syndrome: A Meta-analysis, 2024, Maas genannt Bermpohl et al.

    Ah, the old it doesn't match what we [believe we] see in the clinic therefore the trial data must be wrong gambit. So why bother with trials at all? Clearly the only evidence you will accept is anything that can be twisted to support your pre-existing views. Just declare whatever result you...
  8. Sean

    NHS England web pages on ME/CFS

    And PEM, in this context, could be described as a worsening of the overall symptom profile (not just 'fatigue') after activity, typically with a delay of approx 12-36 hours.
  9. Sean

    Atlantic: ‘If Exercise Could Cure This, I Would Have Been Cured So Quickly’, 2024, Katherine Wu

    is now understood to fundamentally alter the body’s ability to generate and use energy. We don't know yet if this is an energy generation or an energy use problem. I suspect it is the latter, but really just don't know.
  10. Sean

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    No argument there. I just meant if one is going to use intolerance then activity is a more inclusive and accurate word to use with it.
  11. Sean

    Viroid-like colonists of human microbiomes 2024 Zheludev et al

    Just another reminder that we often don't know what we don't know. The old unknown unknowns problem.
  12. Sean

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    IIRC, most studies don't look at severe patients. I agree about being careful of using terms like exercise intolerance. Activity intolerance is better, certainly for ME.
  13. Sean

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    This, plus simply refusing to accept any adverse judgement on the sacred PACE and continually re-citing it to give it legitimacy, appears to be their strategy.
  14. Sean

    Incongruence in FND: time for retirement 2024 Stone

    I felt the same when I first started learning about the situation and history of it all more than 30 years ago, and it still feels the same today. It is a genuinely bizarre Kafkaesque situation that such obviously poor technical and ethical standards have been allowed to become so entrenched...
  15. Sean

    What can we learn from the Post Office scandal publicity (including TV)?

    While we may not yet be in a position to do something similar yet, this has certainly help expose systemic failures and cruelty in our current governance culture, of the very kind that we have to deal with. So when, eventually, we get our turn, the general public are better primed and probably...
  16. Sean

    News from Germany

    Not just from absenteeism, but also from reduced performance of those who physically make it into the office/factory/etc.
  17. Sean

    Earseeds, Acuseeds

    and shows exactly how far we have to go to unburden the ME community from this cruel culture of misinformation. And the vicious decades-long deliberate defamatory smearing of our reputations.
  18. Sean

    Neuroticism, perceived stress, adverse life events and self-efficacy as predictors of the development of functional somatic disorders... 2024 Petersen

    It is characterised by persisting patterns of physical symptoms that cannot be better explained by other physical or mental conditions. It is characterised by persisting patterns of physical symptoms that cannot be better explained by other known physical or mental conditions. Interesting how...
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