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  1. Simon M

    Wakefulness-promoting agents for severe fatigue: to use or not to use? 2024 De Wit et al

    Many years ago, when modafinil first came out, my consultant was running a trial using it for MS. He asked me if I wanted to try it, and I decided it was worth a go despite the potential drawbacks. It gave me a lot more Mental energy in particular. Eventually, it led to relapse. Several years...
  2. Simon M

    United Kingdom 2024: Online workshops on ME/CFS Research

    I guess a lot depends on the number and quality of speakers, but this series of workshop seems like a big step forward and well thought through. Thanks to everyone if you help bring these about. Sounds like the department of health and social care played a leading role?
  3. Simon M

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

    Turns out it is a twin study and was posted here by Chris Ponting in 2019 https://www.s4me.info/threads/repurposing-large-health-insurance-claims-data-to-estimate-genetic-and-environmental-contributions-in-560-phenotypes-2019-lakhani-et-al.7675/ I probably commented it on it at the time, but...
  4. Simon M

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

    I remember a large US insurance study from a few years back - not sure if it wsa this one - but it had a low sex ratio and CFS incidence was highest in the over 60s, making that study look suspect.
  5. Simon M

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

    This is good news, and exactly what we need. With GWAS studies, size makes a big difference, and it’s fairly easy to combine the results of different studies to get more robust results. Separately, it’s also important to validate/replicate findings from one study in a separate, independent...
  6. Simon M

    Large scale phenotyping of long COVID inflammation reveals mechanistic subtypes of disease, 2023, Liew et al.

    I'm not up pon LC research, but I wonder about the relevance of this to ME, or even most LC. It only looks at people hospitalised with Covid, and effectively operationalises LC as anyone with ANY LC symptoms at 3 months, which is pretty broad. The vast majority of people with LC were not...
  7. Simon M

    NIH study - where to start?

    Hi, Janna, and welcome to the forum. Look forward to reading your blog.
  8. Simon M

    Epstein Barr Virus podcast from The Guardian

    Not to mention ME. 17% of DecodeME participants report their illness began with GF.
  9. Simon M

    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Thanks @Hutan , Do you just submit the suggestion or A rationale as well?
  10. Simon M

    Open Medicine Foundation (OMF)

    >>Danielle has an extensive research background spanning various institutions and projects. At Leidos, she worked on the NIH’s All of Us Research Program [this includes a PwME cohort] as a Project Manager and Biomedical Scientist, supporting the development and implementation of new modules and...
  11. Simon M

    A map of metabolic phenotypes in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Fluge, Mella et al

    This is great, thanks. Can you tell us the R and p values (if p values are appropriate comparing between studies)
  12. Simon M

    Pre-Illness Data reveals Differences in Multiple Metabolites and Metabolic Pathways in Those Who Do and Do Not Recover from IM, 2022, Jason et al

    The pre-illness approach is great. The weird categorisation is worrying because it makes no sense, which raises the possibility it is post hoc, created to get some decent results. It was a huge study with a lot riding on it, so a lot of pressure. I'm glad you have found something in it, and...
  13. Simon M

    $720,000 grants to 2 La Trobe University researchers from the Mason Foundation for ME and long Covid research

    Well done on landing this and setting things up so well for a good study. Look forward to seeing the resutls in due course.
  14. Simon M

    Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

    That's very interesting, thanks for sharing. I'd also say that any effect of sex hormones is most likely seen on risk (whether or not you get ME), not symptoms for the illness. DecodeME found women had more symptoms (a bigger effect) and were more severe (smaller effect) than men (not sure if...
  15. Simon M

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    A bit of listening from the NIH would go a long way, certainly on the EEfRT a) they got the EEfRT "effort preference" research wrong. b) the term sucks and doesn't describe ME. Some of the brain and hand grip findings are interesting, in my view. But why use "effort preference", which the...
  16. Simon M

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I think it might be – based on how authors responded to letters about the Pace trial and similar. Those criticised ignore all the strong points and focus on more marginal ones. if there are a few marginal points across several letters, or in a paper, that makes their reply can look stronger...
  17. Simon M

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I think it is a great example of the power of the crowd, even when it is a crowd as ill as this one. Yes - and the graphs! Thank you for the great narrative.
  18. Simon M

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Brilliant analysis and data presentation from @Murph. Perhaps just as important, these patients keep trying despite many near-miss failures - that surely suggests they are trying VERY hard (because they nearly succeed and seem desperate to do so). Which is the opposite of what is suggested. By...
  19. Simon M

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Thank you for this analysis. I've always had a thing for making graphs easy to understand and would like to make a couple of suggestions (without considering changing chart type): 1. The paper consistently uses red for pwme and blue for HV and think we should stick with that for % hard...
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