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  1. Trish

    Long Covid in the media and social media 2023

    Some recent posts have been moved to: News from the USA Crowdfunded awareness campaigns including billboards Covid-19 vaccines and vaccinations United Kingdom news USA Centers for Disease Control (CDC) news
  2. Trish

    Long Covid in the media and social media 2023

    Moderator note This thread is now closed. Moderators have decided to try a different approach with Long Covid media and social media. We are closing this thread and not starting a new one for 2024. Instead Long Covid media and social media will follow a similar practice to ME/CFS media and...
  3. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I think I answered that in the first part of the post you are quoting.
  4. Trish

    Research news from Bhupesh Prusty

    Riga Stradins University is in Latvia.
  5. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    My preference is for the phrase PEM to be reserved for the delayed version that lasts several days and often much longer and really knocks me back so I'm unable to carry out my normal already much reduced functions. The more immediate increase in symptoms and reduction in ability to keep doing...
  6. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    PEM is a significant worsening of symptoms and decrease in function following any exertion, not just exercise. Most of us with ME/CFS aren't able to 'exercise' as a separate activity in addition to what we need to do each day. So exertion can be anything that uses energy, including sitting...
  7. Trish

    Open An investigation into the associations between perfectionism, anxiety and fatigue in people living with ME/CFS, 2024, Westwood

    The previous discussion is on a members only thread here. As was pointed out on that thread, as an undergraduate project it is probably acceptable to use 'off the shelf' questionnaires, since it's about learning how to collect data and analyse it, showing the student can go through the motions...
  8. Trish

    Trial Report Dysregulation of the autonomic nervous system in ME/CFS and post-COVID syndrome: insights from 48-h heart rate variability monitoring, 2023, Ziaja

    Posts about some other studies by the same researchers have been moved to new threads: Advancing Therapeutics for Post-Viral ME/CFS and SFN in Long COVID: A 20- Week Sensomotoric Training Intervention, 2023, Ziaja et al Comparing Fractional Anisotropy Diffusion Tensor Imaging of Patients with...
  9. Trish

    Heterogenous circulating miRNA changes in ME/CFS converge on a unified cluster of target genes: A computational analysis, 2023, Kaczmarek

    This looks to me at a brief glance through like a worthwhile approach to trying to tease out the relevance of a very complicated picture. I hope it leads to more work on collecting microRNA data and further analyses.
  10. Trish

    Cochrane review of exercise therapy for CFS - a brief history from 2019 to 2022 and beyond

    Week beginning 18th December 2023 Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review The 18th December update to the petition reports that to date there is no reply to our letter sent a month ago to Cochrane's head of governance. "We asked Cochrane to...
  11. Trish

    Cochrane review of exercise therapy for CFS - a brief history from 2019 to 2022 and beyond

    Week beginning 2nd October 2023 Petition to Cochrane Withdraw the harmful 2019 Exercise therapy for CFS review The Science for ME petition that enables people to support Science for ME's open letters to Cochrane requesting immediate action on this review and its stalled replacement will remain...
  12. Trish

    Published poems by Veronica Ashenhurst, who has Severe ME

    Thank you for the New Year greetings Veronica, and I wish all the best for you in 2024. And thank you for sharing your poem. I love your use of imagery.
  13. Trish

    People on long-term sick leave in England to be offered therapeutic recreation

    I hate the idea of voluntary groups of singers, walkers, gardeners etc being swamped with people who have no interest in doing the activity but are being forced to do it under threat of losing their financial support. I can imagine groups collapsing under the pressure. I agree, Kitty, it can...
  14. Trish

    Trial Report Cost-Effectiveness of Online CBT for Children with CFS/ME Compared to Online Activity Management: FITNET-NHS Trial Findings, 2023, Crawley

    My concern is that they will now turn the results the other way around and proclaim cost effectiveness for online activity management that includes incremental increases in activity, in other words GET. I remember saying at the start of this trial that they had set it up so whichever group did...
  15. Trish

    Funded: Back to Normal: A study of recovery narratives (studentship)

    Lead Research Organisation: University of East Anglia Department Name: Literature, Drama and Creative Writing
  16. Trish

    USA: Mount Sinai PACS clinic and Dr David Putrino

    What's that? I have left Twitter, so I haven't noticed an awful group, apart from the remission biome lot that seem to be imploding...
  17. Trish

    USA: Mount Sinai PACS clinic and Dr David Putrino

    I don't know what is most promising and what isn't in biomedical research, partly because I'm not an expert, and partly because so little is known so far. There have been lots of promising looking small studies that need replicating, and there are bound to be along the way some that don't work...
  18. Trish

    USA: Mount Sinai PACS clinic and Dr David Putrino

    Thanks @RaviHVJ, that's interesting.
  19. Trish

    USA: Mount Sinai PACS clinic and Dr David Putrino

    As I understand it, David Putrino is a physiotherapist who runs a rehab centre treating people with LC. So the above is presumably based on others' work on microbiology, immunology etc. Does he say who his expert advisors are?
  20. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Immediately after reading your post, I saw this new thread: Biomarker-Informed Machine Learning Model of Cognitive Fatigue from a Heart Rate Response Perspective, 2021, Kar Fye Lee et al I think the way to go with this is not the artificial situation of in clinic testing, but longitudinal...
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