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Another nail in the GET theory too. Marines trying to exercise their way out of the disease and getting worse. "Fear of exercise" in a marine? Sharpe et all could get away with not believing me, but not believing marines, he would not dare.

Thanks for reassuring me. Genetics isn't my thing, that's obvious. Took me a while to figure out the second sentence. Before the crack of dawn, it dawned on me you were singing a George Gershwin song to me: how nice of you.;)

I suppose lying down won't help against autoantibodies. Or is my knowledge lacking here too?

In 2028 researchers might publish about the damage from the variants of Covid that go around now. In the meantime I still try to isolate as much as I can to prevent further damage to my brain.

I don't know if you had time yet to read into the BBB barier and OI and lying down as a protection or repair mode. When OI is expressed as POTS (heart rate up) or dOH (BP drop) or a mixture of heart rate up a bit and BP dropping a bit as it happens in my ME/CFS, could a lowered blood volume...

In 33 ME/CFS years I didn't have a fever after it began. But when it started with EBV and pneumonia I had a really high fever, for three days. Not measured but around 40 C or more. The day before I had moved in with my boyfriend, luckily we had been living together for several months before...

More training on empathy. Knowing all about medical facts isn't enough to become a good doctor. Not only training for students, but for all docs. And prejudice in all forms should be looked at too. (Reddit communications between docs can be painful to watch)

Doesn't "men-flu" exist in the UK? Canadian research some years ago; Women got tranquillizers, men got painkillers for the same kind of pain.

The poor astronauts on ISS can't lie flat, can they? I remember seing an astronaut on ISS, some time ago, getting into his sleeping bag in a head down position; others were upright. I wonder if his brainfog was influenced by that, even in zero-gravity.

Thanks again @SNT Gatchaman for the excellent highlights!! Could activated monocytes, infections/(over)excertion, being prevented from getting to the brain by lying flat?

Nep in Dutch means fake. FND was bad, but a NEP diagnose (first sentence) will not be embrased by Dutch patients, I think.

If you want to try: please check first if your bed can be raised on one end that way. I have a wooden bed and I'm not sure if I'll end up on the floor with a pile of wood that used to be my bed.

Yes. In other words; the wedge starts, slightly, at your feet.

Have read somewhere, sorry I don't know where, that a wedge form does not help. The whole bed has to be lifted on the head side in order to work. In the NASA study the head end was down to simulate space conditions.

@SNT Gatchaman had in the lying flat thread (page 3) a way better suggestion for a real functional function of the need to lie flat: to protect the brain. PEM as brain protection? That's a very functional way of thinking. Functional as used by normal people, not an aberration at all. Maybe...

This is galactic way over my head, but it "feels" very important. An alarm bell that can't or won't switch off in ME/CFS? I hope the better equipped and better working minds can understand this paper in relation to ME/CFS. Please HELP!

You make an important point here. Maybe my brainfog is so bad because I never got the "lie down" signal, because my BP is normal and I'm not dizzy. My CBF did drop 25% in tilt table test. When glycocalyx and/or endothelium barriers are compromised, unwanted stuff will leak into my brain...

True ME/CFS? I find that rather offensive. So 25% and higher are not true ME/CFS?

Compromised barrier in glycocalyx/ endothelium, leaky gut, blood brain barriers? We need an army of Hansjes Brinkers(finger in the dyke) to plug all those holes! And who knows what is getting through the holes that cause more trouble?

Costs of Belzutifan 340,950 per year. Just doing more research using this will be difficult.