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  1. R

    May 10th 2025: Demystifying PEM MedUni Vienna

    From 10-13h (Vienna time) on May 10th there's a conference on PEM at the medical university of Vienna. It is also available as livestream, you'll have to register.
  2. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Could you elaborate on what you'd expect to see (and with whom)?
  3. R

    Design and rationale of MYOFLAME-19 randomised controlled trial, Puntmann et al.

    I'd seen a talk of hers on this topic in autumn of 2024 and she will be presenting in the conference today. Will be interesting to see if they can already share some initial findings.
  4. R

    Design and rationale of MYOFLAME-19 randomised controlled trial, Puntmann et al.

    Background Cardiac symptoms due to postacute inflammatory cardiac involvement affect a broad segment of previously well people with only mild acute coronavirus disease 2019 (COVID-19) illness and without overt structural heart disease. Cardiovascular magnetic resonance (CMR) imaging can...
  5. R

    May 9th 2025: 2nd Long COVID Symposium of the German Centers for Health Research (DZG)

    Long COVID symposium happening tomorrow from 9-17.30. Programme looks interesting and it will also be streamed: live stream Please delete if already shared.
  6. R

    Mestinon

    Just reporting back that it still works great for me. My standing HR rarely goes over 90 now, walking rarely over 100 - resting supine 55-60. Technically, I still qualify for a POTS diagnosis, but my quality of life has improved incredibly.
  7. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    I got some insights from the PI of a couple of these studies:
  8. R

    Normative data for the 10-min Lean Test in individuals without Orthostatic Intolerance

    Lucky you! Mine was aborted after 20 min when besides 140 bpm my blood pressure dropped like hell and I nearly fainted.
  9. R

    Normative data for the 10-min Lean Test in individuals without Orthostatic Intolerance

    From what I understand you should not pump, yes! However, in fact, during my TTT the nurse told me to pump every now and then. The first time I mindlessly did it, then afterwards thought about it and ignored him.
  10. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    No need to be a Dr. or PhD! :) I honestly have not been able to fully go through it, but yes - sleep is very complex and amongst others is important for protein homeostasis.
  11. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Thanks for sharing your experience. I experience the same. Do you take gabapentin regularly? Have you tried any other medication - if so, how were the results?
  12. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Then please don't make these statements as if they were true, this is a science-focussed forum after all.
  13. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Interesting, sounds like something along the lines of what I managed to see in the literature as well. I'm skeptical about "excitotoxicity" being of any significance, but I'll check it! Thanks for sharing!
  14. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Besides looking for anecdotal reports, I would really love to discuss literature here and jointly come up with hypotheses based on said literature. Hoping for more people to chime in - ideally people that are more knowledgeable about sleep architecture than me! :)
  15. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    I'm not sure I'm following your points here, sorry. Would you mind elaborating? Increased microarousals seems to be one measurable differentiator between healthy people and pwME, that does not mean that it is the (or the only) cause for unrefreshing sleep. In fact, as mentioned before, it has...
  16. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    As in, we might have to distinguish between two concepts in ME/CFS, (1) unrefreshing sleep and (2) poor sleep quality? Do you have a suggestion on how you'd do that? Just for my understanding. What I currently envision is something like: 1) pwME have unrefreshing sleep (potentially due to...
  17. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Sorry for that! Regarding "clear evidence" as in doing a deep dive and scrutinizing data on microarousals in different conditions - I have not done that yet, but from review papers there does seem to be a connection between increase of microarousals - especially during deep sleep (SWS). I found...
  18. R

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    First off, I am sorry to hear - that sounds awful. I hope you are better now. Secondly, I am not sure I understand you. What I am saying in point 3 is that I believe if we are able to find the nature of unrestful sleep in pwME and specifically tackle that mechanism, we might see some improvement...
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