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  1. M

    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    Labels aside, Strauss was quite disparaging of people with ME and disbelieving of what they were experiencing. In one scientific paper, he concluded people with ME suffered from "histories of unachievable ambition, poor coping skills, and somatic complaints.” And he concluded a patient's...
  2. M

    What does it mean when an ME/CFS patient says they "got long covid" after catching SARS‑CoV‑2 (COVID)?

    In the case I'm most familiar with, Long COVID resulted in a worsening of pre-COVID functioning and symptoms and the addition of new symptoms that were not there before COVID (for instance a new internal vibration and some chest pain).
  3. M

    Open Natelson patient recruitment, NYC, USA

    Dr. Natelson uses Fukuda to diagnose ME/CFS... From the Mancini paper - "ME/CFS was considered present if at least 1 life sphere criteria was impacted substantially and at least 4 symptoms were rated moderate or greater" From a recent NIH webinar - a slide on how Dr. Natelson diagnoses ME/CFS...
  4. M

    Exercise Training in Post-COVID-19 Patients: The Need for a Multifactorial Protocol for a Multifactorial Pathophysiology, 2022, Cattadori et al

    Wow. I don't think I've heard of people having viruses reactivated with Imunovir. Good to know. Thanks, @Mij
  5. M

    Exercise Training in Post-COVID-19 Patients: The Need for a Multifactorial Protocol for a Multifactorial Pathophysiology, 2022, Cattadori et al

    Thanks, @Mij. Did you have a known trigger to your relapse or did it just happen with no obvious cause?
  6. M

    Exercise Training in Post-COVID-19 Patients: The Need for a Multifactorial Protocol for a Multifactorial Pathophysiology, 2022, Cattadori et al

    Interesting comment. Often, I've seen a post-infectious illness suggested as a diagnosis when the duration is less than 6 months. Could you expand on what was different between the post-infectious syndromes you had for 5 1/2 years and ME?
  7. M

    Cochrane review: Non-pharmacological interventions for somatoform disorders and medically unexplained physical symptoms (MUPS) in adults. 2014

    @Hutan - speaking for myself, MUPS is a clinical thing only in the minds of those who promote it. IMO, it's unscientific to base a clinical entity solely on the lack of evidence and lack of current scientific knowledge.
  8. M

    Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS, Arnaud Germain, Maureen R. Hanson et al, 2022

    Sorry for not being clearer. My understanding is that based on studies showing reproducibility with other diseases, she had expected to see it also be reproducible with ME and when it was not, questioned whether her equipment was broken. But perhaps the core question is what initially led...
  9. M

    Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS, Arnaud Germain, Maureen R. Hanson et al, 2022

    Yes, but the very first time she tested an ME patient, she was expecting to see reproducibility because that's how it is in other conditions. The fact that it was not in ME patients is what made her wonder if it was her equipment.
  10. M

    Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS, Arnaud Germain, Maureen R. Hanson et al, 2022

    I understand from discussions with people at Workwell that the test has been shown to be reproducible in various diseases by repeat testing. This is one example of a study in pulmonary arterial hypertension where they used two tests 1 to 3 days apart and then repeated that up to 6 times and...
  11. M

    Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS, Arnaud Germain, Maureen R. Hanson et al, 2022

    My understanding is that repeat CPET tests are reproducible (have low variablility) in healthy people, in a number of chronic conditions (reportedly includes for cardiovascular disease, lung disease, end-stage renal disease, pulmonary arterial hypertension and cystic fibrosis) and in...
  12. M

    Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS, Arnaud Germain, Maureen R. Hanson et al, 2022

    I participated in a 2 day CPET study with this group as a sedentary control and assume that study is reported in this paper. As noted in the paper, subjects completed the Bell scale and SF-36 questionnaire. The Bell Scale goes from 0 to 100 where 100 is no symptoms at rest and 0 is continuous...
  13. M

    The Multidimensional Fatigue Inventory

    This 2017 paper by Murdock et al evaluated the MFI-20 in ME and reported ceiling effects, and problems with validity and reliability. From the abstract: The general and physical fatigue subscales on Multidimensional Fatigue Inventory-20, as well as the role of physical health on the RAND SF-36...
  14. M

    Evaluating case diagnostic criteria for ME/CFS: toward an empirical case definition, 2022, Conroy, Jason et al

    Good question and probably my fault as my question above took it outside the scope of this thread so some of the following responses belong in this thread about Jason's expanded PEM assessment that @Andy posted above.
  15. M

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Assuming you mean reason for not giving a date, no they did not. As I said above, I don't speak for Cochrane but I would hope it would be soon. I'll continue to follow up.
  16. M

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    @Adam pwme I've heard back from Cochrane on whether/when they will be providing an update on the evidence review. They do plan on doing that but the specific date is to be confirmed still.
  17. M

    Predictors for Developing Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome following Infectious Mononucleosis, 2022, Jason et al

    I don't know why Jason used this definition of severity. And I agree with the comments above - severity can have a spectrum but that spectrum is not a function of what case criteria was used. And referring to Fukuda patients without PEM and at any level of severity as ME patients confounds research.
  18. M

    Evaluating case diagnostic criteria for ME/CFS: toward an empirical case definition, 2022, Conroy, Jason et al

    @Adam pwme - Thank you. This is especially helpful. Do you know of any existing instrument that comes close to assessing PEM in this way? I'm asking because we have researchers new to the field, including Long COVID researchers, and it would be helpful to have a common method to identify the...
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