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  1. Andy

    How do long COVID patients perceive their current life situation and occupational perspective? ... 2023 Schmachtenberg et al

    Introduction: Many people experience persistent or new-onset symptoms such as fatigue or cognitive problems after an acute infection with COVID-19. This phenomenon, known as long COVID, impacts physical and mental wellbeing, and may affect perceived quality of life and occupational perspectives...
  2. Andy

    Therapeutic trials for long COVID-19: A call to action from the interventions taskforce of the RECOVER initiative 2023 Bonilla et al

    Lots of mentions of ME/CFS. Thought this was less than ideal, my bolding. "Post exertional malaise (PEM), also called “crash,” has been clinically defined as an increase in fatigue, pain, cognitive dysfunction, and flu-like illness after physical exertion, mental activities, or stressful...
  3. Andy

    Therapeutic trials for long COVID-19: A call to action from the interventions taskforce of the RECOVER initiative 2023 Bonilla et al

    Although most individuals recover from acute SARS-CoV-2 infection, a significant number continue to suffer from Post-Acute Sequelae of SARS-CoV-2 (PASC), including the unexplained symptoms that are frequently referred to as long COVID, which could last for weeks, months, or even years after the...
  4. Andy

    Why we need a deeper understanding of the pathophysiology of long COVID Iwasaki/Putrino 2023

    For those who need a direct link to the comment article, https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00053-1/fulltext
  5. Andy

    Online Health Communities in Controversy over ME/CFS and Long Covid, 2023, Jackson

    "Significantly, though, the OHCs [Online Health Communities] studied here pose no threat to the more fundamental idea that science is the path to better health care; both ME/CFS and Long Covid patients are notable for their unshakeable confidence in biomedical science." Unshakeable confidence...
  6. Andy

    Online Health Communities in Controversy over ME/CFS and Long Covid, 2023, Jackson

    Not sure I agree with this [bolding mine], "In the consultation [of the 2007 NICE Guideline] over the surveillance proposal, OHCs shifted much of their effort from trying to get patient surveys taken more seriously to trying to get RCTs taken less seriously. The committee that drafted...
  7. Andy

    Clinical Effectiveness and Cost-Effectiveness of Supported Mindfulness-Based Cognitive Therapy Self-help Compared With Supported CBT.. 2023 Strauss

    Mindfulness better than CBT for treating depression, study finds "Practising mindfulness is much better than taking part in talking therapies at helping people recover from depression, a British study has found. People who used a mindfulness self-help book for eight weeks and had six sessions...
  8. Andy

    Clinical Effectiveness and Cost-Effectiveness of Supported Mindfulness-Based Cognitive Therapy Self-help Compared With Supported CBT.. 2023 Strauss

    Full title: Clinical Effectiveness and Cost-Effectiveness of Supported Mindfulness-Based Cognitive Therapy Self-help Compared With Supported Cognitive Behavioral Therapy Self-help for Adults Experiencing Depression The Low-Intensity Guided Help Through Mindfulness (LIGHTMind) Randomized...
  9. Andy

    Survey: "TREAT ME" (ME/CFS & Long Covid Treatment Survey), by 'LongCovidPharmD'

    "#TREATME Update: 1. Over 3,600 responses! 2. This Tuesday I zoom with experts involved in complex chronic illness research & machine learning to review survey & discuss plans for analysis! 3. Due to requests, I'm keeping the survey open an extra two days thru Tuesday."
  10. Andy

    Closed UK: DecodeME updates, was recruitment thread.

    I'm sure you will all be excited to learn that we have made the first version of our data analysis plan available on our website. Read our blog about what it is, why it is important, and why we are sharing it in our blog, https://www.decodeme.org.uk/our-gwas-data-analysis-plan/ Social media...
  11. Andy

    Trisha Greenhalgh on ME/CFS and Long Covid

    My best guess is that it has been blocked due to second- or third-hand connections to accounts that TG took offence at. This earlier post from Jan 2021 links to a Twitter poll that shows, at the time, 67% of 678 respondents reported having been blocked by TG, so I don't think her blocking...
  12. 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.
  13. 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...
  14. 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
  15. 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...
  16. 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...
  17. 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...
  18. 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
  19. 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...
  20. 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...
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