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.
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.
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...
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.
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.
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.
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.
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?
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!
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! :)
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...
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...
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...
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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