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I'm severe, but the only difference to being moderate is that I have a very small energy envelope. I get tired very quickly and it adds up throughout the day which means I feel best in the morning when I wake up and before doing anything. I feel worse when I wake up with PEM, but apart from that...

:rolleyes:

Also same. Mostly. Daytime naps and waking up with a headache were my first ME symptom when I was mild. I still fall asleep briefly when I overdo it, but these days I mostly feel better when I wake up. FWIW I don't experience unrefreshing sleep.

NOK 4.4m raised so far. https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/ Was NOK 4m the goal for this particular fund? I guess we'll find out in a a few weeks when they post an update.

I agree, great summary. There's a small typo towards the end "The Norwegian and the Scheibenbogen group both have plants to trial drugs that target CD38 and plasma cells."

@V.R.T. I can't find the exact post, but I think you sent her an email a while ago? I take it she never replied? She's been invited to the ME/CFS Research Foundation conference in May. Hopefully she is going to present new results.

I think that's unlikely. We had a discussion a few months ago where people said the brain doesn't actually use all that much energy. I've experienced a very weird switch a week ago where I triggered PEM by watching TV. I was physically severe until then and since then I am physically moderate...

How does the muscle theory reconcile with sensory triggers like sound?

Oooh there's a whole team gou teng subgroup :rolleyes: I thought he was the only one https://nitter.net/ClemensMarliani

Does PEM block PEM for anyone else? Most of the time PEM is just a nasty headache for me which means I'm not fatigued and I don't have muscle weakness. While I do rest when I'm in PEM, my body doesn't usually force me to. The other day I woke up with a PEM headache and took a shower...

I don't think we can say that. NK cell count does not seem to correlate with severity and I doubt it correlates with symptoms. FWIW my NK cells were moderate and I don't get flu-like symptoms in PEM.

If only. PolyBio (may their funding dry up) have project Viper. German researchers aren't only focused on a single biomarker, but multiple ones so they can define LC and ME/CFS subgroups.

That happens to everyone. It's what's supposed to happen. In POTS the reaction is a bit exaggerated. There's no doubt pwME are deconditioned by being sedentary, but that's better than triggering PEM. Of course being entirely sedentary is bad assuming that nothing else is wrong with you lie...

Janet Dafoe is also sharing and defending Leisk's protocol: https://nitter.net/JanetDafoe

They are not planning to retreat non-responders, but they will retreat responders if and when they relapse. https://euclinicaltrials.eu/search-for-clinical-trials/?lang=en&EUCT=2024-512500-19-00 A lot of the other things have been discussed here...

Whitney is completely wrong. He claims Leisk has a good biomedical understanding of PEM. He's now also one of those people who support the idea that our nervous system is acting up.

Are we really promoting GET and BPS nonsense about the nervous system? I don't get nervous when I go to the bathroom, my muscles don't shake and I don't get flushed - but if I do it one too many times per day, I get PEM. And whatever PEM is, it's not a sympathetic overload when I dare take a...

International ME/CFS Conference on 7-8 May 2026 in Berlin, supported by ME/CFS Research Foundation The fourth instalment of the International ME/CFS Conference, hosted by Charité Fatigue Center (CFC), and organised in cooperation with the ME/CFS Research Foundation, will take place in Berlin on...

I wish he'd just stay off his phone for a while. And OMF should ideally distance themselves from him if this family can't tell apart fact from fiction. Maybe it's time for Ron Davis to retire and let other people, who are less emotionally involved, continue his work.

The best side effect I had were vivid dreams. I miss those lol. Agreed. What's going on? Were people donating to a study or to get dextro manufactured? Or both? I don't recall.