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  1. Simon M

    Lancet: Acute COVID-19 severity and mental health morbidity trajectories in patient populations of six nations: an observational study, 2022

    They used the PHQ-9, which was developed for screening healthy populations but which awards points for core ME/CFS & long covid symptoms including sleep problems, fatigue and problems concentrating. The PHQ-9 is inappropriate for measuring depression in this population - the authors might well...
  2. Simon M

    "Why do we need a genetic study like DecodeME?" Blog in British Science Week.

    I hope the Mods won't mind me creating a thread for this blog, which looks at why genetic studies are so important. Posted for British Science Week. Decades on, and with over $100m spent on research (it should have been much more), we still don't know for sure any causes of ME/CFS. Genetic...
  3. Simon M

    Preprint Medrix: Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS - Helliwell, Tate et al -2022

    N is too small to draw any conclusions. But I agree, the approach is very interesting (and could also be applied to other biomolecules). I haven't read this paper but I have been extremely impressed by the methodological rigour in earlier Warren Tate studies. What we need now is a much bigger...
  4. Simon M

    What paper found 25% of patients are housebound/bedbound?

    This is my analysis on PR from 2016 of the Pendergrast/Jason study and others, including looking at biases https://forums.phoenixrising.me/threads/jason-et-al-housebound-versus-nonhousebound-patients-with-me-cfs.44330/post-724544 Short version: The study provides support for a 25% rate of...
  5. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    Three more remarkable poems from Veronica. Her best yet, in my view. Bulwark: To Jane Eyre On being housebound: ...far from That turquoise line of beckoning, where sky And earth embrace. I’m scared the arctic tern Caged in my ribs will break its wings over A view it cannot see, while walls...
  6. Simon M

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    And there’s nothing like a big pot of money – in this case about £25 million – to get the attention of researchers from outside the field.
  7. Simon M

    What paper found 25% of patients are housebound/bedbound?

    They’ve been quite a few studies since then and it does seem to be reasonably good for 25% equals housebound. Eg Pendergast
  8. Simon M

    ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 , 2022, Greenhalgh et al

    Why is this is a thing worthy of mentioning in the abstract? It is why almost all people consult a medic, regardless of their illness. I wish medics and researchers shared patients' motivation to search for physical mechanisms.
  9. Simon M

    DecodeME - UK ME/CFS DNA study underway

    Not as far as I know. Taking any medication won't affect your DNA. Possibly if you were on strong chemotherapy that causes severe fatigue, but I can't remember if that's in the screening questionaire.
  10. Simon M

    Guardian Science Weekly podcast: Weekly Science Are we getting any closer to understanding long Covid? With Prof Akiko Iwaskai

    I hadn't seen this posted anywhere else. Listening to it now. Focuses on the immune system. Yale's Akiko Iwasaki is always good on Long Covid even if the Guardian and the interviewer, Ian Sample, are not...
  11. Simon M

    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    @Snow Leopard Nice analysis. If I've understood you right, you are saying the authors have shown decent antibody binding of GlialCAM (which could explain MS) but only weak binding against EBV protein EBNA1. And that this could just be because the glialCAM ab happens to bind EBNA weakly - not...
  12. Simon M

    Generalised worry in patients with [CFS] following Cognitive Behavioural Therapy - a prospective cohort study in secondary care, 2022, Chalder et al

    I can't access the paper. Here's the Work and Social Adjustment Scale https://www.networks.nhs.uk/nhs-networks/regional-mental-health-commissioning-networks-portal/documents/wsas.pdf "People worried more when their ME/CFS caused worse problems with being able to work, socialise, manage a home...
  13. Simon M

    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    DecodeME has tweeted about the relevance of this to ME/CFS. And the MRC retweeted DecodeME...
  14. Simon M

    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    A new paper in Nature says: Here we demonstrate high-affinity molecular mimicry between the EBV transcription factor EBNA1 and the CNS protein GlialCAM, and provide structural and in-vivo functional evidence for its relevance... Our results provide a mechanistic link for the association between...
  15. Simon M

    (Preprint) Excess risk and clusters of symptoms after COVID-19 in a large Norwegian cohort by Caspersen et al.

    Comments For me, the most striking thing about this well-done study is that it finds two biologically coherent groups of symptoms among those with long covid: one a post-infectious ME/CFS and POTS-like cluster, e.g fatigue, brain fog, memory issues and palpitations. the other a chest-based...
  16. Simon M

    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    This excellent Scientific American article covers the paywalled article. Some comments, mostly based on the SA piece. Study method Researchers had long suspected a link between MS and EBV but it's hard to study the connection when 9 in ten adults are already infected with the virus. This came...
  17. Simon M

    DecodeME - UK ME/CFS DNA study underway

    New member-only thread DecodeME - which studies should we be able to compare results with?
  18. Simon M

    Rare variant contribution to human disease in 281,104 UK Biobank exomes, 2021, Wang et al

    I asked Chris Ponting who said he thought were referring to: PHOSP-COVID (hospitalised individuals), REACT-LONG COVID (whole genome sequencing for a couple of thousand people) or Sano Genetics (a few thousand, whole genome sequencing).
  19. Simon M

    DecodeME - UK ME/CFS DNA study underway

    well, the data from the (edit) GWAS should prove a useful test for the vast number of competing hypotheses that are produced to explain ME/CFS. However, not finding a genetic signal would not be definitive, especially for a single GWAS of 25,000. It's not a small study, but hopefully, over time...
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