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  1. poetinsf

    What Doesn't Kill You [Forthcoming Documentary]

    I meant intellectually understand, not emotionally. I can't even remember how I felt when I was sicker. But I do remember a few facts like how I lied down for weeks at a time while my windows got periodically dark and light, and I can hook onto those memory pieces to mentally reconstruct how it...
  2. poetinsf

    Growing old versus ME/CFS—which is which?

    Fatigue may be associated with aging, but I wouldn't consider it an inherent part of normal aging. Some cancers may be associated with aging, but we don't' consider it an inherent part of aging after all. But ability/stamina declines are obviously. People tend to get more deconditioned as they...
  3. poetinsf

    What Doesn't Kill You [Forthcoming Documentary]

    Looks like a beautifully made film about a severe ME/CFS case. One concern I always have with stories about severe cases is that they make an impression that ME/CFS is an exotic illness that people can't really relate to when the majority of 3 million people, as quoted in the teaser, are...
  4. poetinsf

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    Not yet, he said he needs to finish his paper on lactate first. But they have published a similar paper on FMS about a year (?) ago and it doesn't appear to have made a definitive impact. The inflammation for ME/CFS that he showed on the video appears a lot more wide-spread and definitive than...
  5. poetinsf

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    That's my thought. And my guess is that he feels pretty confident about the paper he is about to publish. I'd contribute myself if the paper pans out -- a chance at being able to jog 4x150m without crashing the next day will be worth substantial sum to me. He's asking donation to fabricate the...
  6. poetinsf

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    Sounds like he's pretty convinced neuroinflammation is the cause of ME/CFS and others. $5m may be a pittance in this age of billions and unicorns, but you have to have some conviction to move forward with the project that requires committing years of effort and fund raising to develop the compound.
  7. poetinsf

    Activity/symptom logging

    I finally got off my butt and ported my fatigue/PEM prediction model completely over to R. Now I'm trying to figure out how to package it for the users. The best way probably is a website that people can log in with their google/fitbit ID to view their intraday/inter-day data and play with the...
  8. poetinsf

    Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion, 2025, Germain et al.

    Things like GWAS or -omics studies are interesting. But I think they mostly show anomalies and not much more. And whatever anomalies they find are probably way downstream from the actual mechanics of ME/CFS to the point that they are not much of use. I remember someone comparing it to core...
  9. poetinsf

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    I agree. If the pseudo-coloring of the inflammation vis a vis the control holds, it would leave no doubt about the microglial activation. We'll just wait and see what the peer reviewers say.
  10. poetinsf

    October 2025 IACFS/ME Conference

    Fascinating article. It seems like a follow-up to the Walitt paper that found catechol anomaly. I always ask how the hypothesis explains PEM, and this one seems to attribute it to norepinephrine depletion in LC vesicle. Not sure how that would work for PEM lasting weeks or months. I'll looking...
  11. poetinsf

    Trial Report [Abstract] - Individualised aerobic and resistance exercise training improves exercise tolerance in individuals with [LC]: [PERCEIVE], 2025, Howden+

    If you allow me to speculate, I'd say it is directly responsible for worsening the hypersensitivity. Whatever is primed to respond to exercise (or the product of the exercise like low grade inflammation) could be getting even more aggravated by exercise. Mine always returned back to the...
  12. poetinsf

    Trial Report [Abstract] - Individualised aerobic and resistance exercise training improves exercise tolerance in individuals with [LC]: [PERCEIVE], 2025, Howden+

    I can anecdotally testify to this. I did a few pushups and dips a few times a week about 15 years ago. People actually noticed the change in my physique a year later. Only problem was that my QOL went to hell through that time. I decided that the improved physique wasn't worth the suffering and...
  13. poetinsf

    Review Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease, 2025, de Canson et al

    The patient criteria in the intervention studies listed in this article look vaguely like ME/CFS, except that they are much worse than 1994 Fukuda definition. It's like we are going back in time. And therein lies my criticism of LC studies: it's an amalgam of everything left over from covid as...
  14. poetinsf

    Independent: Father attempted suicide and family almost lost home after GP missed common genetic condition for six years

    On the flip side, many doctors are reluctant to give out ME/CFS diagnosis because of they are afraid of misdiagnosis. At least that seems to be the case in this side of the pond. Doctors inconspicuously scribbled "chronic fatigue" rather than "chronic fatigue syndrome" on my chart for a long...
  15. poetinsf

    Post-Exertional Symptom Exacerbation after Sub-Maximal Exercise in Individuals with [ME/CFS] and Post-Acute Sequelae of COVID-19, 2025, Berardi et al

    Yeah, 25 min of moderate cycling is A LOT. I usually ride at 10 mph or less, and 25 min nonstop is at the borderline for PEM trigger for me. And I'm supposed to be recovered. When I was moderately sick, walking 98 steps/min for 10 min was enough to trigger a bad PEM. The exercise indicates that...
  16. poetinsf

    Should we initiate development of a new, short questionnaire to identify PEM (to aid diagnosis)?

    Late to the party as usual. To me, the defining characteristic of PEM is the abruptness. You do just a little more than you should, and the bottom suddenly falls out. That's in contrast to fatiguability or exercise intolerance which maintains the linear relationship to the exertion, more or...
  17. poetinsf

    Aripiprazole - Abilify

    The crash may come even if you don't do more. Drugs often entail withdrawal when you stop taking them and you could crash if the brain produces less of what was protecting you from symptoms/PEM. Nicotine seems to be particularly bad in that regard. If the effect lasts weeks and the withdrawal is...
  18. poetinsf

    Aripiprazole - Abilify

    So, the effect lasts a few weeks and then dissipates? If it is reliably reproducible, there must be something to it, least for your ME/CFS. Ability is a dopamine stabilizer, btw, so it may affect different people differently.
  19. poetinsf

    On fatigability and rationing as improved terminology over fatigue and pacing

    I would add rather than replace. As problematic as the word may be, fatigue itself definitely is a prominent symptom for many patients including me. Waking up feeling unrefreshed or depleted, for instance, is fatigue rather than fatiguability. To me, fatiguability and PEM are two different...
  20. poetinsf

    Patient management of post-viral fatigue syndrome,1990, Ho-Yen

    I think Wallitt and his team need to read this paper. The fact is that the recently ill patients usually try to maintain pre-illness activity, get sicker with PEM, then they still try to keep going because they don't understand PEM. According to Wallitt, however, they must've heard about PEM...
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