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To see that history repeats itself over and over again is always hurting me, although it is never suprising. We need to unite with all the other discriminated diseases and we should tackle this discrimination against sick people once and for all. The Aids movement had so much power - it is...

In my case, B6 leads to the inability to sleep. But I have a "B6 intolerance" (I get tremor and so on, too). Small dosages are enough to start this, it just takes longer than with higher dosages.

This topic is confusing. Although I agree that it sounds plausible that being supine for longer periods will lead to certain problems - maybe including POTS/NMH - there seem to be several examples indicating this doesn't have to be the case. @jaded's story for one. I was diagnozed ca. 1.5...

This is what I thought about also. I do not agree anymore it's "low hanging fruit". That's how I understood it: Findings up til now seem to indicate there are the following problems (while upright): blood circulation into the small vessels (i.e. into the "periphery", i.e. less oxygen gets...

Which lab did that test?

The law regulates responsibility. It is the patient that makes the decision, and it is the patient who has the responsibility for it. Therefore the law demands that the doctor informs about effect, side effects and options so that the patient can make an informed decision. In fact, at least in...

I find this very interesting. I encounter so much problems because I can't hide I'm informed (about my health condition, not about medicine in general), and I'm denied access to medicine that might help - I think because of that. power imbalance Just yesterday something like that happened -...

I think this is really a good reason to celebrate! Thank you to all participants and organizers! What a huge accomplishment.

And I didn't mean to suggest. Just found it interesting that your topic is "blood circulation" (especially the blood vessels) because I think that's a problem in me, too, and I think it may be a cause (?) of OI symptoms.

I can only speak from my experience and my personal "theory". Two other things indicate for me that my blood vessels don't behave "correctly": I have Raynaud's, and another test (some measurement of the small vessels in the finger) showed the vessels don't open enough - I don't have details...

Signed.

It's in Osler's Web, and I thought Hillary Johnson wouldn't just trust on "hearsay"?

For me, the center of the petition was around discrimination. I realize that everybody may read out something differently. Fact is ME is psychopathologized in Germany - see Henningsen at the 4th Columbia Psychosomatic Conference last year who said that CFS is a cultural phenomenom that is rare...

She does. As I said, I think there are weaknesses. I don't agree with everything and I could critisize and call for changes. But I think the action is more important than being absolutely correct (in a scientifically sense) - we don't have much action in Germany. The demands are reasonable. The...

I found that part "funny" - you cannot stand too long, you cannot sit too long, and you shouldn't lie too long, and ME makes it difficult to constantly switch between standing, sitting, lying - so what can you do?

I just realized during tilt table test that OI induces a heavy fatigue plus cognitive problems in me, like "brainfog" (and other symptoms that reminded me of hypoxia experiences I've made elsewhere), something I put on the ME symptoms list. If it weren't for the other symptoms and the knowledge...

The petition is by Katharina Voss, and if I remember correctly it has been running for a while. 12.773 signatures is really good, but obviously more is needed (I think 50.000 for an evaluation by the petition committee?). The petition is addressed to Jens Spahn the German Health Minister...

It's terrible, this on and off. But there's an ongoing transcript.

I don't see anything, too.

What means class C exactly? That doesn't sound too good. And what would be the alternatives?