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@Michiel Tack, thank you so much for working out a proposal! I always think your documents are well worded. I would be interested to sign this proposal to NIH if you decide to send it as an individual. I could also help where needed - please let me know. Personally I think it is more important...

Can only US clinicians contact them? Does someone know?

I had lots of infections. I understood that there exists this and that.

Yip-piieeee! :angel: How I'd love to see Henningsen's face when @dave30th takes apart his bullshit. :sneaky: Hey @andypants! o_O we need him, too, very VERY much :hug: Ok, all of those countries would need him...

So if the doctor has a problem with his emotional life and tends to react inadequately to his/her shortcomings, the patient has a psychosomatic illness?!

:eek: Yes, ouch! And I thought Ubiquinol is expensive... Thanks @Ravn for explaining. :)

I may have a (simplified) idea why walking steps might be more troublesome with POTS than just standing or walking flat. Our body always has to compensate for gravity (e.g. regulation of blood flow to the upper body). If our head denotes a point in space, then in order to move our head from...

What's mitoQ? I have to admit I made a comparable experience with Q10 (Ubiquinol). I didn't feel anything with 50mg Q10 daily. Some day my doctor wanted me to take 200mg daily. I was very sceptical because up til then no supplement really made a change (but who knows, maybe they prevented...

Could this explain (amongst others) why taking stairs feels so darn exhaustive?

Baaaaahhhh!

Well, democracy IS about power to the people. Idiot. So IF pwME had this degree of power, that would be the right thing in a democracy.

PEM is not unique to ME.

I referred to the Roman Statute. The facts are out there. And yes, they need to be collected and properly presented as evidence. Edit: But to be clear - inside the legal frame, the ICC cannot be the first step.

This is so awesome.

I would like to do exactly this. But without money no way. And class action lawsuits are not possible here.

You need to go the national way first. I think this may be via the criminal law. Countries can be sued, but I don't know the specifics. (I'm trying to get more info on this.) After the national way come the international possibilities, like the International Criminal Court. But the ICC only...

This is fascinating. Where is the process, in which country? I was told, in Germany there is no legal way re. guidelines. But maybe I asked the wrong person. I remain unconvinced it's impossible. It all gets back to money. Where to get it? I am struggling financially, and I highly doubt a...

With money. If money is around, anything goes. (That's not very specific I know... For every country, the legal frame is different. Often, only individual cases can come before court, so we'd need many pwME that go the legal way. Plus, before the international courts can be called, the national...

I am a bit divided on this. I think it's great there is now a center that will house ME/CFS. It's unique in Germany, and it's the right step. They offer a 2-day-CPET following the protocols from publications. It subsumes cancer and MS related fatigue as well, but also a psychosomatic clinic...

On some days (in the past weeks more daily...) if I stand 10mins, my pulse is somewhere at 143.