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  1. Andy

    Trisha Greenhalgh on ME/CFS and Long Covid

    I've asked for the forum account to be unblocked, though I'm not holding my breath for it to happen.
  2. Andy

    Exercise Reporting Template for long COVID Patients: A Rehabilitation Practitioner Guide 2023 Gradidge et al

    The term “long COVID” or variations refers to secondary conditions following infection from severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) persisting for ≥ 4 weeks.1 Long COVID symptoms are complex. Symptoms may include fatigue, shortness of breath, headache, difficulties...
  3. Andy

    International: Science for ME social media posts

    Published papers thread for w/c 20th March Facebook: https://www.facebook.com/sci4me/posts/pfbid032mLpEVjE6UaByST3cbkQ7MXhnTctkhziNqbAeZ7SzuCrVgsFiueaQpCxAmysY9nTl Mastodon: https://med-mastodon.com/@s4me/110094534414443455
  4. Andy

    UK: Invest in ME Conference 2023

    EMRGecr (European ME Research Group early career researchers) Workshop/conference 2nd June 2023 "To (re)initiate the network we have arranged a new young/ecr workshop to take place on 2nd June 2023 at the Wellcome Genome Campus near Cambridge, UK, in parallel with the 15th International ME...
  5. Andy

    Closed UK: DecodeME updates, was recruitment thread.

    @MSEsperanza I'll pass your suggestions and observations on to the team. As Binkie notes, some parts of our sample system work quickly, others parts not so much. In general, the parts that work quickly are the ones directly under our control, while the slower parts are where we have to rely on...
  6. Andy

    FNDs after COVID-19 and SARS-CoV-2 vaccines: a national multicentre observational study 2023 Alonso-Canovas et al

    Functional Neurological Disorder Emerges After COVID Infection, Vaccines ""We show for the first time evidence from a multicenter national study that FNDs after COVID-19 infections and vaccines are more common than previously reported and have distinct clinical profiles," Alonso-Canovas told...
  7. Andy

    International: Science for ME social media posts

    News in Brief posts for w/c 20th March. Facebook: https://www.facebook.com/sci4me/posts/pfbid02KCreyDDf89W2VjMG2MsrzzKK7nGvvJk4H8xMBDXmwnkF9A6C1JcCNQzDE4HU1mRtl Mastodon: https://med-mastodon.com/@s4me/110089234178729898
  8. Andy

    Working together: reflections on how to make public involvement in research work 2023 McVey et al

    Background The importance of involving members of the public in the development, implementation and dissemination of research is increasingly recognised. There have been calls to share examples of how this can be done, and this paper responds by reporting how professional and lay researchers...
  9. Andy

    Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications 2023 De Simoni et al

    Background Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on...
  10. Andy

    Commentary on my personal experience of patient and public involvement in the TOPSY trial, 2023, Graham and Goodman

    Background to commentary Patient and public involvement (PPI) in research is now widely expected and encouraged at all stages of the research cycle. PPI members provide expert knowledge of the lived experience and their contribution is crucial. The plethora of publications on PPI has increased...
  11. Andy

    Emotion regulation and the salience network: a hypothetical integrative model of fibromyalgia, Margarida Pinto et al 2022

    Reply to: Hypothetical model ignores many important pathophysiologic mechanisms in fibromyalgia, 2023, Pinto et al "In sum, we do not disagree with the substantive points in the correspondence from Clauw et al.1, but we do disagree with how our paper2 is summarized. We primarily aimed for a...
  12. Andy

    Emotion regulation and the salience network: a hypothetical integrative model of fibromyalgia, Margarida Pinto et al 2022

    Hypothetical model ignores many important pathophysiologic mechanisms in fibromyalgia, 2023, Clauw et al "We would like to respond to the Perspective article by Pinto et al. (Pinto, A. M. et al. Emotion regulation and the salience network: a hypothetical integrative model of fibromyalgia. Nat...
  13. Andy

    Trisha Greenhalgh on ME/CFS and Long Covid

    If anybody has any interest in being unblocked by TG on Twitter.
  14. Andy

    News from Portugal

    Copied from News from South America "We are pleased to welcome #MillionsMissing Aliança, which brings #MECFS groups and individuals from #Portugal & #Brazil together. It aims to expand to the entire Portuguese-speaking community." "#MillionsMissing Aliança has a public facebook group for the...
  15. Andy

    News from South America

    "We are pleased to welcome #MillionsMissing Aliança, which brings #MECFS groups and individuals from #Portugal & #Brazil together. It aims to expand to the entire Portuguese-speaking community." "#MillionsMissing Aliança has a public facebook group for the moment. Join it...
  16. Andy

    SMART Pharmacists Serving the New Needs of the Post-COVID Patients, Leaving No-One Behind 2023 Šipetić et al

    Abstract This study aims to demonstrate the improvements in clinical symptoms in patients with post-COVID syndrome after a community pharmacy-based intervention in Serbia. The Pharmaceutical Chamber of Serbia (“Chamber”) invited pharmacists to deliver post-COVID patient care counselling...
  17. Andy

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    Trial By Error: An Update on the Missing Ethics Corrections in Multiple Esther Crawley Papers "In 2019, the University of Bristol and the UK’s Health Research Authority issued a report about their joint investigation of 11 papers. The lead investigator of all 11 papers was Professor Esther...
  18. Andy

    Finland: 2023 Helsinki University Long Covid conference

    Opinions overtook science at HUS Long Covid symposium "On 16 March 2023, HUS organized the international Long Covid symposium ”Navigating the unknown: Exploring Realities and best practices on Long Covid”. About 100 people were present, mainly physicians, among whom were representatives from...
  19. Andy

    Spain: Predoctoral Fellowship: Pathomechanisms of Myalgic Encephalomyelitis, Fibromyalgia and Long COVID‐19. Applications close 31st May 2023

    "Research group: Gene expression and immunity Catholic University of Valencia (UCV), Valencia, Spain https://www.ucv.es/investigacion/grupos‐de‐investigacion/grupoclave/1435 Availability of a UCV sponsored predoctoral fellowship towards the completion of a Doctoral Thesis degree in the...
  20. Andy

    Exercise-induced changes in gene expression do not mediate post exertional malaise in Gulf War illness 2023 Boruch et al

    Highlights • Gulf War Veterans with GWI experience PEM. • GWI had significantly lower post-exercise ACTB, COMT, and TLR4 gene expression. • Gene expression did not mediate symptom post-exercise symptom exacerbation. • Post-exercise gene expression differs from responses reported in ME/CFS. •...
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