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  1. Sid

    What proportion of people with ME/CFS who become severe or very severe do so within the first three months? Did you?

    Mild for the first 10 years or so. Near-remission in early 20s able to attend college and then graduate school and full-time work. Severe from mid-20s onwards, probably thanks to introducing exercise after GP urged me to. Severe for several years, then slow improvement to moderate.
  2. Sid

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    Just a word of caution about those online TDEE calculators. They assume that whatever your weight is now is your natural, un-dieted weight. Thus, they don't take into account that you are already weight reduced which results in greater-than-predicted reduction in energy expenditure as a result...
  3. Sid

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    Are you tracking your calories by any chance? At the risk of stating the obvious, at the end of the day, one has to be in a calorie deficit to lose weight. For sedentary women with ME/CFS like us, maintenance calories can be surprisingly low, and those TDEE calculators online give an unrealistic...
  4. Sid

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    The abstract says "This was an observational, retrospective analysis of de-identified patient-level claims data from 461,382 adults newly prescribed GLP-1RAs between 7/2017 and 12/2021 with no prior diagnoses of nutritional deficiencies." To me, this implies that they didn't have pre and post...
  5. Sid

    Using AI tools for medical questions, as a patient - Discussion

    These AI chatbots are heavily trained on Reddit posts so they often suggest pseudoscientific nonsense that's popular in non-evidence based online communities.
  6. Sid

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    That's amazing, congrats! The % loss is exactly what you'd expect based on the average outcome in clinical trials of tirz.
  7. Sid

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    I’ve been on tirzepatide for a few months. 30 lbs lost. Zero effect on ME/CFS symptoms, as expected. Millions of people are on these drugs. If they cured our condition, we’d know about it.
  8. Sid

    Large-scale investigation confirms TRPM3 ion channel dysfunction in ME/CFS, 2025, Marshall-Gradisnik et al

    In the case of MDs I work with, it's unintentional. Doctors receive very little methodological or statistical training so they don't really know anything about science. Most of the papers I read in my area of research are analysed incorrectly or suboptimally unless they're a funded trial that...
  9. Sid

    A Case Report of Headache and Weakness Diagnosed as Functional Neurological Disorder 2025 Wilson et al

    If you grimace, you're being dramatic so it's FND. If you're stoic, you are exhibiting la belle indifférence so it's FND.
  10. Sid

    CAR-T therapy

    It seems to me that every month I stumble on some new disease getting dramatic results from CART. I'm amazed no one has tried it yet for ME/CFS. That NEJM publication is literally waiting for whoever does it first (if it works...).
  11. Sid

    CAR-T therapy

    NEJM: Intraventricular CARv3-TEAM-E T Cells in Recurrent Glioblastoma
  12. Sid

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    It was tough. I got sick in the pre-internet era (early 1990s). The GPs I saw either said it was nothing or "anxiety". I had no idea what was wrong with me for many years. All I knew was that each time I exerted myself too much, I'd get strange flu-like symptoms 24 hours later, lasting about 3...
  13. Sid

    Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise, 2025, Mancini, Natelson et al

    This is a very old idea indeed. There are papers from the UK published in 1980s claiming the same thing. If breathing retraining fixed ME/CFS, we’d know about it by now.
  14. Sid

    Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway…, 2014, Bakken+

    I recall this study being discussed at great length. Perhaps it was on the previous forum.
  15. Sid

    USA: The RECOVER Initiative - Long Covid research

    Oh dear. LDN has been around for many, many years. If it worked for ME/CFS (and, reasonable to assume, Long COVID by extension) we'd know by now. Literally millions of Americans are on GLP-1 agonists; again, if these drugs led to reliable improvements in ME/CFS symptoms, you can bet this...
  16. Sid

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    According to ambulance-chasing lawyers, yes. But not according to this large meta-analysis in JAMA Psychiatry: Results: A total of 27 of 144 RCTs meeting inclusion criteria systematically recorded suicide and/or self-harm-related events and included 32 354 individuals receiving GLP-1 RAs and 27...
  17. Sid

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    Tirzepatide had no discernible effect on my ME/CFS symptoms even at fairly high dose. It's very effective for other things, as others have noted, but not for my core symptoms.
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