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  1. Sean

    DecodeME in the media

    The only words I want to hear from that man, and his fellow travelers, are 'sorry', and 'I resign'. And at well above the average rate for the general population. The poorly understood illness, which is estimated to affect many millions of people worldwide, is associated with debilitating...
  2. Sean

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    So is an infection triggered neuro-immune condition a broadly correct characterisation of ME/CFS, based on these findings? Maybe it is identifying currently healthy people who have an increased genetic risk of getting ME/CFS. Would be interesting to follow that group for a few decades and see...
  3. Sean

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Stronger associations would have been nice, and there is the issue of inconsistency across studies to be addressed. But otherwise a very welcome and important step forward, that should help focus research efforts on more productive possibilities. Thank you to all involved. :thumbup...
  4. Sean

    DecodeME blog: X marks the spot where ME/CFS biology can be discovered

    Thank you, @Simon M. Clear and informative as always. :thumbup: Any idea how expensive, and how much value there is in a full detailed gene map study? Or do we have enough now to start focusing down?
  5. Sean

    Design and validation of an energy level diary for fatigue management in patients with post-COVID syndrome, 2025, Balke et al.

    The whole energy/fatigue paradigm, and especially 'managing' it, has been a disaster. It has completely derailed understanding and treatment.
  6. Sean

    Financial burden of patients with post-acute COVID-19 syndrome, 2025, Scheel-Barteit et al

    PCS is a high subjective financial burden What does 'subjective' mean in this context? Personal?
  7. Sean

    Health Care Use Before Multiple Sclerosis Symptom Onset, 2025, Marta Ruiz-Algueró, MD, PhD et al

    Yes. The correct interpretation is that doctors send patients to psychiatrists, not that patients 'see' psychiatrists. Don't know about other countries, but here a patient can't just go to a psychiatrist. They have to be referred to them by another doctor (usually a GP/PCP).
  8. Sean

    Trial Report Outcomes of specialist physiotherapy for functional motor disorder: the Physio4FMD RCT 2025 Nielsen, Stone, Edwards et al

    Functional motor disorder often causes persistent disabling symptoms that are associated with high healthcare costs. In recent years, specialist physiotherapy, informed by an understanding of functional motor disorder, has emerged as a promising treatment, but there is an absence of evidence of...
  9. Sean

    Somatic symptom and related disorders: Guidance on assessment and management for paediatric health care providers 2025 Saunders et al

    They all do. They have a basic template including stuff like how common it is, how difficult it is, how much it costs the economy, how important the sales pitch is, blah blah blah.
  10. Sean

    Closed UK: DecodeME updates, was recruitment thread.

    Gets released at 0430 Thursday my time, and it's late Tuesday afternoon here. So two more for me.
  11. Sean

    The entities enabling scientific fraud at scale are large, resilient, and growing rapidly 2025 Richardson et al.

    Now vastly more complicated and voluminous due to AI, and only likely to quickly get even worse.
  12. Sean

    The entities enabling scientific fraud at scale are large, resilient, and growing rapidly 2025 Richardson et al.

    who do not conduct any quality controls on submissions Maybe they are just following the example of the established mainstream journals (at least in some areas)?
  13. Sean

    Closed UK: DecodeME updates, was recruitment thread.

    Exactly. This is one of those studies that will tell us something useful, maybe even important, regardless of the actual results. Strong, weak, null. They are all meaningful outcomes that will help focus future research efforts. All that matters is that it is methodologically robust. Thanks...
  14. Sean

    Spreading depolarisation (SD): a potential underlying mechanism in functional neurological disorder (FND) 2025 Carlson et al

    Functional neurological disorder (FND) presents with neurological symptoms lacking a structural correlate and is thought to result from brain network dysfunction. Despite advances in understanding its pathophysiology, several knowledge gaps exist. The main one being the mystery of how the FND...
  15. Sean

    Health Care Use Before Multiple Sclerosis Symptom Onset, 2025, Marta Ruiz-Algueró, MD, PhD et al

    Mental health–related visits and visits for ill-defined symptoms and signs were elevated 14 to 15 years before MS onset, followed by neurology and ophthalmology consultations (8-9 years before onset) and musculoskeletal, sensory, and nervous system visits (4-8 years before onset). Which could...
  16. Sean

    Metabolic adaptation and fragility in healthy 3-D in vitro skeletal muscle tissues exposed to [CFS] and Long COVID-19 sera, 2025, Mughal+

    There are few things I want more in this world than a robust in vitro model for PEM. That really would be a game changer for research and for us.
  17. Sean

    News from Austria and Switzerland

    There must be accountability. Letting those responsible for this grotesque catastrophe just slink away quietly into a comfortable retirement is totally unacceptable. All that will do is let it happen again to another group of innocent victims. See FND.
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