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  1. 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...
  2. 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)
  3. 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...
  4. 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.
  5. 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...
  6. 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...
  7. 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...
  8. 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.
  9. 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...
  10. 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...
  11. Simon M

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

    Thanks for running the GEEs - and yes, I completely agree. I think the participant exclusion is flawed but not that relevant because the 65% hard-task completion rate for PwME (thanks for running that analysis) shows the test was invalid for use in this study. Game over.
  12. Simon M

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

    I've not read this, but it might answer some of the questions being raised about EEfRT and how it was used Statistical analysis of effort expenditure for rewards task Following the analytic strategy described by Treadway15, generalized estimating equations (GEE) were used to model the effects...
  13. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    “His research protocols focus on deeply phenotyping persons with disorders characterized by aversive symptoms that develop after exposures, such as infection. Currently, he is working with patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gulf War Illness (GWI), and...
  14. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Thank you for doing this, the results are reassuring. Are you able to share the data?
  15. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Thank you, @Paddler for taking part in the study and for sharing your experience. What an ordeal. As ou say, their hypothesising has drawn attention away from the main point of the study. I didn't know that about the study interest in interoception and it forming part of Wallit's (job?) title...
  16. Simon M

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

    Just seen this - great work. I think it is exactly what we would expect: EEfRT raw data analysis by @bobbler Minimal difference on 12% win probability tasks where easy tasks are more logical Likewise 88% win probability tasks were hard tasks are more logical Significant though not massive...
  17. Simon M

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

    In case this hasn't been shared already:
  18. Simon M

    Muscle Fatigue during Dynamic Contractions Assessed by New Spectral Indices, 2006, Dimitrov et al.

    @Hutan posted from it: Further studies are needed to fully establish the validity and reliability of the new spectral indices for testing muscle performance in the clinical, rehabilitation, and sports setting. So, a tiny study, not validated, least of all for comparing ill vs healthy. Wallit...
  19. Simon M

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    This is very important for interpreting results. It's a tiny study. I don't think a meaningful comparison of HV vs patients is possible for a complex pattern like the Dimitrov Index. I suspect any conclusions based on the difference are not statistically valid. Correction: the figure says it...
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