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  1. poetinsf

    PEM-like descriptions and accounts in non-ME illnesses

    Yes to both. CCC requires PEM and PEM is defined as "worsening of symptoms 12-48 hours after exertion".
  2. poetinsf

    PEM-like descriptions and accounts in non-ME illnesses

    Anecdotal reports notwithstanding, no such PEM is generally observed in ME/CFS. That is why PEM is specifically defined as "worsening of symptoms 12-48 hours after exertion" in the context of ME/CFS. If other conditions have the symptom that fits the definition, then we could (and should) look...
  3. poetinsf

    PEM-like descriptions and accounts in non-ME illnesses

    The PEM is defined as "worsening of symptoms 12-48 hours after the exertion" because it is observed as such, not by assertion. We don't know anything about the underlying biological process, so there is no point talking about the biology as part of the definition. The mitochondrial "PEM" does...
  4. poetinsf

    3 Levers to pull to solve a disease

    I've been wondering, could ME/CFS be solved if trillions of dollars were available? Despite LC making the splash recently, ME/CFS is still not conceived as serious or visceral as cancer or Altheimer's in popular imagination. Add to that the notorious difficulty of ME/CFS research, you could be...
  5. poetinsf

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    It would be fancy if they sell it as *the* cause of ME/CFS as Jeff Wood does. But such pressure could put the brain immune system on the edge similar to what concussion does, and we already know concussion can cause debilitating fatigue. Again, it may not be worth looking into if it's only one...
  6. poetinsf

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    If there were several unexpected and independent cases like that, I'd call for an investigation for it as well. One accidental case may be just a coincidence, but several could point to a something that may lead to the actual mechanism of ME/CFS. Observation of recovery from depression after...
  7. poetinsf

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    Yes, but what I meant was that the surgery wasn't intended for their ME/CFS. It was for something else whereas Rituximab or brain retraining was intended for ME/CFS. Intracranial Hypertension.
  8. poetinsf

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    Are you saying they were misdiagnosed with CCI? Or there is no such a thing as CCI? That's a little different. Those are known therapies while CCI/IH surgeries aren't. Accidental discoveries are anecdotes as well, but I'd look into them more carefully than those prone to placebo and...
  9. poetinsf

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    No possibility of CCI resulting in obstruction/injury or pressure on brain stem? Activating neuroimmune response similar to concussion? I'll take your word for it. But I've heard a few credible-sounding cases of CCI and one IH patients previously diagnosed with ME/CFS then recovering after...
  10. poetinsf

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    Where might I find that growing literature? There certainly are CCI cases that mimic ME/CFS, and it might be productive to look into it as to why. But extrapolating it to the cause of ME/CFS will be fruitless because, well, not too many ME/CFS patients have craniocervical pathologies. My...
  11. poetinsf

    Ear Pressure, “Ear Barotrauma”

    I get that all the time. I have Eustachian tube dysfunction and the ear pressure, along with pops and crackles, gets substantially more noticeable when coming down with PEM. That's why I started talking Sudafed. I talked about this several times before.
  12. poetinsf

    I'm able to exercise but am still disabled

    For what it's worth, deconditioning seems to lower my PEM threshold. When I was sicker, both my conditioning and PEM threshold pretty much stayed constant since I couldn't exercise. Now that I can, 2x8 pushups, if I haven't done it for a while, bring about a short crash the next day. One could...
  13. poetinsf

    Using Heart rate monitoring to help with pacing.

    One thing I forgot to mention: patients in mild/recovered stage are less likely talk of crashes coming out of the blue. Other triggers and accumulation effect are minimal in that stage and therefore the effect of exertion is much more pronounced. This is why I keep saying that the research...
  14. poetinsf

    Using Heart rate monitoring to help with pacing.

    Some may. But most would agree that there is a strong relationship between exertion and crash most of the time. (There are triggers other than exertion that could trigger PEM seemingly out of the blue, but that does not mean exertion above certain level is a cause). The question here is whether...
  15. poetinsf

    Using Heart rate monitoring to help with pacing.

    The unpredictability comes mostly from inability to measure/estimate the exertion across different activities. If you take just one exercise, walking for example, you can more reliably trigger, or avoid, PEM by walking certain distance/speed. That is the reason why patients employ fixed routine...
  16. poetinsf

    [EV] proteomics uncovers energy metabolism, complement system, and [ER] stress response dysregulation postexercise in males with [ME/CFS], 2025,Glass+

    I'd file that under "anything is possible" without knowing what that trigger is and how the reported EV anomaly pulls that trigger down the road. That's a longer chain of events, therefore a bigger speculation, than the anomaly being the trigger itself. We already know that the immune response...
  17. poetinsf

    Using Heart rate monitoring to help with pacing.

    I've done lots of experiment 15 years ago and saw a clear relationship between amount/intensity of exercise at PEM threshold. Yes, it was n=1 and unblinded. But I think it'll tell us a lot if we can profile the relationship between duration/intensity/rest and PEM trigger rather than putting the...
  18. poetinsf

    [EV] proteomics uncovers energy metabolism, complement system, and [ER] stress response dysregulation postexercise in males with [ME/CFS], 2025,Glass+

    I haven't read the paper yet, but it seems like yet another discovery of anomaly rather than anything groundbreaking. 1) Despite anecdotal reports of immediate PEM, PEM is usually defined as worsening of symptoms after 12-48 hours. For some, PEM is like a truck rolling over you on precise...
  19. poetinsf

    I'm able to exercise but am still disabled

    There are anecdotal reports of unfamiliar activities (or using muscles that they haven't used a while) triggering PEM. If such patients magically became super fit somehow, they would be less prone to PEM. And the minor improvement in 6MWT in GET trials probably is of similar effect (assuming...
  20. poetinsf

    Causal relationship between immune cells and post-viral fatigue syndrome: a Mendelian randomization study, 2025, Wang et al

    Could this be groundbreaking? There have been lots of speculations about T cells, CD24, TLR etc. with no causality. Causality could give a strong focus for research.
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