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  1. Andy

    Preprint Probing sustained attention and fatigue across the lifespan, 2023, Hanzal et al

    Abstract Trait fatigues reflects tiredness that persists throughout a prolonged period, whereas state fatigue is defined to be short term after “intense and/or prolonged effort”. We investigated the impact of prolonged sustained attention (using the SART task) on both trait and state fatigue...
  2. Andy

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Wow, what a coincidence that is all in progress at the same time as the open letter and petition! Great work by Trish, Hutan and all to force this out of them, although I shall remain sceptical of their "next few weeks" timescale until I actually see them publish something.
  3. Andy

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    Start of merged preprint thread Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is an acquired disease with significant morbidity that affects both children and adults. Effective tools to assess functional capacity (FC) are severely lacking which has significant consequences for...
  4. Andy

    Exploring Comorbidities in Adolescent and Young Adults with Hypermobile Ehlers–Danlos Syndrome with and without a Surgical History: 2023 Ganon et al

    Full title: Exploring Comorbidities in Adolescent and Young Adults with Hypermobile Ehlers–Danlos Syndrome with and without a Surgical History: A Preliminary Investigation Abstract Ehlers–Danlos Syndrome (EDS) is a rare disease affecting the skin, joints, vasculature, and internal organs...
  5. Andy

    UK Government ME/CFS Delivery Plan consultation

    And while I'm getting things about the consultation off of my chest; if they wanted to limit the number of responses that they received from pwME then they possibly couldn't have picked a better format - it is an atrocious document. The way I, and the rest of the team, approach DecodeME...
  6. Andy

    UK Government ME/CFS Delivery Plan consultation

    When I have had the energy and time I have tried, on multiple occasions, to wade my way through the interim delivery plan, understand the content, and then formulate my response and I have really struggled to do so. Having read through, in particular, the responses from the ME Association and...
  7. Andy

    UK Government ME/CFS Delivery Plan consultation

    ME Research UK's response to the consultation, https://www.meresearch.org.uk/our-response-to-the-dhsc-interim-delivery-plan-on-me-cfs/
  8. Andy

    BMJ Neurology Topic Collection: "Advances in Functional Neurological Disorder", 2023

    It looks like us noticing has been itself noticed as the page now reads, "Expanding the diagnostic criteria for FND: can nociplastic pain, irritable bowel, ‘post-concussion syndrome’, persistent fatigue all have the same pathophysiological basis? Should the DSM/ICD criteria be updated?". I guess...
  9. Andy

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    7,719 signatures at time of posting. https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
  10. Andy

    The relationship between self-reported chronic stress, physiological stress axis dysregulation and medically-unexplained symptoms 2023 Schulz et al

    Highlights Chronic stress is a positive contributor to medically-unexplained symptoms (MUS) Low frequency heart rate variability (HRV) is a positive contributor to MUS Cortisol awakening response is a positive contributor to MUS Chronic stress mediates the relationship between HRV and MUS...
  11. Andy

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    7,497 signatures at time of posting. https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
  12. Andy

    The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

    The molecular immune signature in ME/CFS as stratification tool for future personalized treatment Projectomschrijving ME/CFS is a serious chronic disease for which there is no proper treatment. In this project, blood from the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium will be...
  13. Andy

    The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

    Explaining skeletal muscle-related symptoms in patients with ME/CFS: from skeletal muscle to exercise immunology (MuscleME) Projectomschrijving The MuscleME project aims to better understand the pathophysiology of muscle pain, fatigue and worsening of symptoms after exercise (post-exertional...
  14. Andy

    The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

    Brain changes in ME/CFS: Focus on the stress and immune system Projectomschrijving Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) has various neurological symptoms, such as mood swings, lack of energy and problems with sleep and concentration. Despite initial evidence of brain...
  15. Andy

    The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

    Converging neurobiological and immune pathways in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-infectious fatigue syndromes (PIFS) Projectomschrijving Patients with myalgic encephalomyelitis (ME) and/or chronic fatigue syndrome (CFS), or ME/CFS, have similar symptoms to...
  16. Andy

    The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

    EnergiseME: Evaluation of the link between auto-immunity and derangements in immune cell metabolism and function in ME/CFS Projectomschrijving Which alterations in the metabolism of immune cells could be the cause of ME/CFS? To find out, researchers will map the metabolism of immune cells from...
  17. Andy

    The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

    Autoimmunity as a cause of ME/CFS symptoms (AutonoME) Projectomschrijving ME/CFS is a debilitating disease with an unknown cause. It is possible that autoimmunity plays a role in ME/CFS; this means that people produce antibodies directed against their own body, which can thus cause a wide...
  18. Andy

    The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

    Sub-studies As a broad national coalition of research institutes, patient organisations and clinical centres, the NMCB consortium will jointly conduct research on highly relevant research themes. The research projects test innovative hypotheses that can lead to a thorough understanding of...
  19. Andy

    The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

    This project is one of several that have been discussed in this thread, The Netherlands - €28.5 million ME/CFS research program - funding awards announced April 2023 I thought it was worth having its own thread primarily due to the sub-projects that are also attached to it. Project overview...
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