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  1. Andy

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

    Trial By Error: Why Are Exercise Studies for Long Covid Still Failing to Address PEM Adequately? "No ”exercise reporting template” for long Covid is acceptable if it fails to include a recommendation of rigorous pre-screening for PEM/PESE. Since many patients themselves might not be aware of...
  2. Andy

    COVID-19 and the Physio4FMD trial: Impact, mitigating strategies and analysis plans, 2023 Marston, Carson, Edwards et al

    Study information Scientific title A randomised controlled trial of specialist Physiotherapy for Functional Motor Disorder (Physio4FMD) Acronym Physio4FMD Study hypothesis Functional motor disorder (FMD), also known as conversion disorder, is a common disorder affecting movement. Patients...
  3. Andy

    A new paradigm is needed to explain long COVID, Saunders et al 2023

    Good response. "To us—public health scholars with lived experience of post-COVID-19 condition—the model appears indistinguishable from old biopsychosocial models. For decades, such models have been misused to inaccurately characterise similar conditions, such as myalgic encephalomyelitis (also...
  4. Andy

    Serum GDF-15 Levels Accurately Differentiate Patients with Primary Mitochondrial Myopathy (…) from Patients with [CFS], Bermejo-Guerrero et al, 2023

    Perhaps in Spain but not in the UK. They don't explain what criteria was used to diagnose the ME/CFS patients. (Cross posted with Cassava)
  5. Andy

    Recruiting: A Study of a Positive Emotion Intervention for the Treatment of Long COVID-19 Symptoms, University of California, Lopez

    SUMMARY This study is testing a new brief mindfulness practice for people suffering from long COVID-19 symptoms. People suffering from long COVID are particularly vulnerable to negative emotions, as they must also cope with the long-term uncertainty of physical and psychological stress beyond...
  6. Andy

    Chiari I malformation management in patients with heritable connective tissue disorders 2023 Clarke et al

    Background Chiari malformation type I (CMI) is relatively common neurosurgical condition typically treated with posterior fossa decompression. However, the management of CMI in patients with heritable connective tissue disorders (CTDs), such as Ehlers-Danlos Syndrome, Marfan Syndrome, or...
  7. Andy

    Cost of illness in patients with post-treatment Lyme disease syndrome in Belgium 2023 Willems et al

    Background A proportion of patients with Lyme borreliosis (LB) report long-term persisting signs and symptoms, even after recommended antibiotic treatment, which is termed post-treatment Lyme disease syndrome (PTLDS). Consensus on guidance regarding diagnosis and treatment is currently lacking...
  8. Andy

    Veteran Beliefs About the Causes of Gulf War Illness and Expectations for Improvement 2023 Kane et al

    Background Individuals’ beliefs about the etiology of persistent physical symptoms (PPS) are linked to differences in coping style. However, it is unclear which attributions are related to greater expectations for improvement. Method and Results A cross-sectional regression analysis (N = 262)...
  9. Andy

    Social economic factors and the risk of multiple chemical sensitivity in a Danish population-based cross-sectional study: 2023 Bjerregaard et al

    Objectives Multiple chemical sensitivity (MCS) is a rare multisystem and poly-symptomatic disease characterised by a report of various somatic symptoms attributed to inhalation of volatile chemicals in usually harmless doses. The aim was to explore four selected social factors and the risk of...
  10. 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...
  11. 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...
  12. 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...
  13. 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
  14. 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...
  15. 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...
  16. 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...
  17. 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...
  18. 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."
  19. 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...
  20. 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...
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