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Yes. I can't remember a poster :( And I fear it's too much to look it up. But maybe there's an index. I'll have a look.

Ah, I forgot I thought that when I heard "against high blood pressure". Especially at night my blood pressure is normally low. Yeah, discussing it with a doc... :bored: see above. I'm gonna talk with another doctor about it in some weeks. Let's see.

Well, it seems my Kit didn't arrive. I am told now that I have no activated kit. Nice. Good luck @TigerLilea

The question also is: Which of these organizations has members that they represent? So can these organizations trully say they represent people with ME? E.g. Lost Voices Stiftung - which is doing good work - doesn't offer a membership if I understand their homepage correctly. So strictly, they...

That's maybe the long-time plan of university based data archiving? Or it could be.

Thank you @adambeyoncelowe for all the information! I will look at it. It's all very helpful. Also thank you very much @Helen for your hint with choline. Spontaneously I thought "Wait, there was something" - and I recalled my allergy-like (or whatever) reactions to Progestan. One of the...

Thank you @Helen, I will look into that. Is choline unproblematic with our ME issues? Or with MCAS or muscle problems?

Interesting. Personally, I like the OpenAccess idea. But this means Swedish universities have no access to Elsevier starting with July. Hm...

My GP won't prescribe Clonidine because it would be an off-label use :( so I'm trying 25mg of Pregabalin right now. I'll probably won't take it for long. The pain is indeed gone. But today I have headaches instead (don't know if it's PEM though...or both...).

Exactly the same here. I wrote them 1 or 2 months ago. They said that these "special offers" who were part of a study will take longer. They would work on the probes as possible, in between the officially sold kits. So I'm expecting a LONG time.

So happy for you @Thinktank!

Wonderful, @Luther Blissett!

Or differently said - as two people working in the psychology field once said: We can't release our raw data because people will see we're cheating and manipulating.

I don't have trust in them, I'm sorry. Thanks for all the info here!

There was a "rule" in coaching - don't use "not". I and others will actually overread the "not", i.e. "I'm pretending to be sick". Don't know actually if that's true for some or many...I just know from myself when I had bad nausea, to think "I'm not unwell" won't help with it, but "I'm well"...

:rofl: It's less than that - it's just being tired. You shouldn't exaggerate things, you know :D

Thank you so much @Gingergrrl for your post! You motivate me to demand my EMG and ENG test results from the neurological clinic (although I guess it didn't show something; I guess SFN is more probable).

Just came across this thread, and it's pretty interesting for me. I'd say the same in my case. Fitness, muscles, nerves, pain...all this seems to get worse and worse, whereas cognitive function isn't. I, too, would like to be properly checked for mito issues or whatever... On the other hand, I...

I agree @Alvin. I view this idea as one possible step. I think there's also another big problem: Some/Many ME organizations. Can you imagine AfME would use the slogan "ME: The disease of the living dead"? I can't. If I look at IAME - and how many organizations seem to have joined - I can't ever...

I played tennis myself - but not at Wimbledon of course! :) Actually, ME is living death. A family member actually looks as if she's already had laid in the grave; that's not a joke, it's shocking. I agree that big numbers can only be really achieved with emotions. You name two of those that...