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Isn't 40 sessions commonly done for HBOT & LC or ME? 8 Weeks of 5 sessions/week. The 10 sessions discussed here seem quite little in comparison. Current trials (all doing 40 sessions): https://clinicaltrials.gov/study/NCT06452095 https://clinicaltrials.gov/study/NCT06267300...

Thanks for the tip, yes I've been tested and no autoantibodies against acetylcholine receptors found. Also no muscle weakness as it would present with MG.

Neither beta blocker helped me much with the increase of HR when standing up. They might have lowered it from 140 to the 120s. They had more effect on my supine resting HR. Propranolol (10 mg TID Q6H) helped me with this tired but wired feeling but it had a negative impact on my lung function...

Mixed POTS and OI. No "classical" dysautonomia symptoms such as GI issues or dry/watery eyes/mouth, according to my doc. What exactly is up, is probably a mystery tbh.

Another update to pyridostigmine: As of now I can confidently say it's "cured" my symptoms. I'm at 30 mg TID and my HR while standing has reduced from 120+ to 75-85 (55-65 supine), I feel much less fatigued, no chest tightness when standing, no lightheadedness, no nothing! Got a massive boost in...

If the expected out come is of equal or higher value. You missed a crucial part of the definition. It's obvious that anybody rational would take the certain option if the outcome is equal. The thing is, as in our case there's many unknowns, the risk assessment is inherently imprecise. Hence the...

In my understanding risk aversion is a tendency to go for certain outcomes over incertain outcomes. It's not about always avoiding risk all together. Just quoting quick google search: "Risk aversion is a preference for a sure outcome over a gamble with higher or equal expected value." or "(...)...

Sounds like risk aversion to me. Nothing is without potential side effects/harm. It's always about the balance between effects and side effects and what risks are ok to be taken given the patient's circumstances. Potential pros and cons shall ideally be assessed on an individual case by case...

I haven't been following this thread closely, but to me it seems like these last few posts are basically just about different philosophies? Some people are more risk averse and prefer not to take symptomatic ("experimental") treatments due to potential negative effects, while others prefer...

That sounds similar indeed. It kind of feels like I'm lacking air but I also can't inhale well, as if something were pushing on my ribcage, constricting me, stopping me from taking a deep breath. As if I were out of breath after having run a 10k but unable to properly inhale. I've always...

Alright. It's helped me loads so far, maybe it could help others - really hope so :)

In this case it would likely be statistically significant (as well as objectively measurable), as I'm tracking my heart with the visible app and the polar verity sense and have many data points for unmedicated vs medicated - enough to show a statistically significant difference between...

That the three meds managed to reduce my standing HR during daily life from 140 to 120 or so (resting supine still from 70 to 60) but that had not impacted my quality of life much. I had a table tilt test done (on all meds) about 10 days ago before starting the Mestinon and it was aborted after...

I just wanted to report a positive outcome, for what it's worth. I've been on fludrocortisone, midodrine and beta blocker (started with propanolol, switched to nebivolol) for POTS for about half a year with "statistically significant" effects, but rather mild improvements to QoL. A week ago I...

Following your experience, it might be interesting to see a study over 12 or 16 weeks then. Agree that a2 agonism is downstream in your hypothesis and not the root cause (which would be "better" to tackle). Thanks!

For the same reasons to replicate a study with a positive result, plus adolescents are not adults.

@TamaraRC has your hypothesis on the adrenergic components changed with your newer pre-print? Wondering if there's been any recent study replicating this one on clonidine and CFS in adolescents? Here, clonidine was deemed useless in CFS. Wonder if it might be different in adults, or whether...

Has anybody watched the two sessions and can maybe share interesting insights? 11.45 Ladislav Valkovic (University of Oxford): Using Magnetic Resonance Spectroscopy to non-invasively detect mitochondrial dysfunction in Long Covid and ME/CFS 12.10 Sheeza Mughal (IBEC, Barcelona). Developing...

Prefacing with the comment that I've only let the hypotheses be summarized by AI, I have not been able to read the paper yet. From what I understand, the main idea is NET expression reduction (due to or exacerbated by increased insulin receptor sensitivity, potentially caused by PC deficiency)...

I am wondering why Huperzine A or other centrally (and selectively) acting AchE-inhibitors like donepezil aren't used for OI or POTS - in a similar fashion to pyridostigmine (peripheral and unselective) but with added central effects potentially helping with brain fog? Any clues?