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Sounds interesting. Does anybody know whether orexin/hypocretin levels have been measured in pwME? This drug increases wakefulness as an agonist of the OX-2R. Seems to have worked well in Phase 3 and anecdotally it seems to be a game changer in type 1 narcolepsy. And similar drugs for type 2...

There was a full presentation on neutrophils and their abnormal activity in the Ron Davis webinar. I was too brainfoggy to remember much though. Maybe somebody else made some screenshots.

As Rob Phair also mentioned.

Was thinking the same.

purinergic signalling, eATP, P2 receptors (e.g. on neutrophils) have come up more than once - I haven't read much about these on S4ME. Any insights?

Covid caused it Biggest improvements in quality of life came from pyridostigmine (pots/oi), LDA (cognitive dysfunction) and agomelatine (insomnia).

Is this an increase in BuChE? Pyridostigmine/Mestinon inhibits AChE and BuChE afaik

What does it help the patient with? How long have they been taking it, and how much?

As mentioned in another thread - baclofen (which also works on GABA-B receptors, like GHB mentioned here (which additionally works on the GHB receptor)) makes me sleep and feel better. Interesting.

So frustrating

Sometimes I get PEM (or what I believe to also be PEM) where I am more tired/fatigued/weak than normally, have some muscle/bone/joint aches and a super sore throat. I don't feel horrible though and I am keen on going out for a walk or doing something. Out of carefulness, I end up doing nothing...

In my experience (since April) absolutely.

The in ear thermometers might also be an option.

Ah, just by proxy of these medications affecting sleep architecture in a specific/different fashion compared to hypnotics like Z drugs, antihistamines and such. The latter had never improved the restfulness of my sleep, besides sleeping longer. Baclofen and gabapentinoids being able to increase...

24 pages in a couple days of being afk :D cannot conceivably go through all this, please excuse my question: Have any findings been linked to sleep disruption?

Final boring Update until something changes: still working perfectly! 80-90 BPM while upright, muscles fatigue less quickly. Very happy with being able to improve quality of life by treating my OI/POTS. 60 mg TID

Back on topic, I've tested baclofen, clonidine and agomelatine (discussed in different thread) these past months. Agomelatine makes me fall asleep, baclofen and clonidine make me sleep deeper (objectively measured with sleep as Android and polar verity sense). I prefer baclofen over clonidine...

Oh, I thought my previous quoted text that defined ADAs as anti-drug antibodies was clear. And you were talking about the anti-drug response. I take, your previous posts though, quoting the 1% fatality, are regarding adverse effects and not anti-drug antibodies? That number sounds quite high to...

Understood. Immune effector cell-associated neurotoxicity syndrome, seemingly one of the SAEs of the drug we're discussing. Surely can also be caused by hypersensitivities? Until now I only thought about ADAs as detrimental to efficacy of the drug, but you're suggesting they can be fatal to...

Most certainly a lot of weird things there! As EndME mentioned earlier in this thread as well.