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This is so important. Happy and sad. (Thank you @Lisa108 for the link - I wanted to save it, and I couldn't on Facebook.)

Thank you, and @Alvin. This feels so very good right now, you don't know how good and important that was for me right now. It is so cruel that pain is often so easily dismissed.

I think something is the matter with the nerves (well, surprise surprise with ME), at least in this leg. And the ENG was this "last drop". I also believe that this neuropathic pain would have come some day, but maybe not before 5 or 10 years. My cool GP isn't. His opinion was, "psychosomatic"...

Thank you, @Anna! :angel: I have tried CBD oil. What dose do you take? I will try again and "play" with the amount. I didn't take Pregabalin yesterday (again, experimenting), and it seems the pain is returning, but today very low. Today I feel wired, although I didn't sleep well. It's not a...

I agree with you. But I also think that a friendlier work climate and less harmful stress would be positive for everyone.

Nooooo! Those people musn't misuse Feynman! I can imagine all my former physics and maths colleagues making....Woahhhh! :arghh: (Well, we would also make nasty remarks and would have a good laugh... :D)

This is what I found on p. 154: Is it what you meant?

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.