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See @Forbin s post #28 - I don't think she meant it literally :) we still have the probability of predisposing factors and/or some sort of double or triple hit. And of course we still have no idea why polio led to paralysis in some people but not nearly all. Could be a similar situation, just...

25 or so dogs dead so far, and only a few days from first sign of symptoms til death. Difficult to distinguish from symptoms that are normal this time of year and so very hard for veterinarians to separate the animals in acute danger from those who will recover on their own until it’s too...

I thought her point was that whatever it is that triggers ME it is very “clever” in that it makes us very ill but leaves us looking healthy most of the time, meaning no one worries about catching ME because it doesn’t look real/scary. So no one bothers trying to find or fight whatever the...

Still nothing?

cyclo paper has finally been submitted, great news.

This members only thread will probably solve it for you;)

Probably!

When I’m feeling worse I tend to move more too. Partially because I crave distraction from feeling horrible and partially from being wired.

And, kronisk utmattelsessyndrom (aka chronic fatigue syndrome) is quite a mouthful. No one has ever used KUS, and CFS doesn’t correspond directly so it all gets very confusing unless you’re already familiar with the different terms. So yes, ME is a lot easier.

I think my story is a pretty common one. I first got sick at 19 but it took 10 years for it to become so serious I was diagnosed with ME. So officially my onset was at age 29, but in reality it was (probably) at 19. So I was pretty sick through all of my 20s, but since I managed to stay in...

Big parts of my family have signed up for this reason. Firstly, bigger numbers mean more power, but it’s also a very effective way to contribute since your money is more than doubled. Especially since you only pay full price for the first member in any given household. We only pay $10 extra for...

Correct. Membership is around $40/year, and the government matches that with around $55 per member if I remember correctly.

I think it’s only 1 month without Prime, but I’ve had several 1 month trials at separate times and come away with a free book every time. Once they even offered me a $20 coupon to stay, another free book:)

How does that fit with the fact that a lot of women develop autoimmune disease and ME from pregnancy/childbirth? Also, haven’t women always had more of these issues, even if the frequency might be higher now (which I have yet to see any convincing evidence of)? Not buying it.

Others probably know more than me about this, but Katharina Lien did (possibly still ongoing) her PhD on ME and has been involved for several years, I don't know how she became involved to begin with. I believe she is largely the reason why there's a research group at the University of Oslo...

I think the use of ‘invisible’ is all in the context. It’s one of the points where we can band together with other groups for broader advocacy efforts. For instance, the Norwegian Arthritis Association had a big media campaign this year about living with an invisible illness. It led to a series...

@Wonko makes a great point. It was a long time ago, but there was one period where I would get these severe hypoglycemic episodes. From your description, my experience sounds fairly similar now that I think about it. Shaking, cold sweating, feeling dizzy and like I had to sit down immediately, a...

I don't know Marky, just wanted to say that it sounds horrible. I really hope you find some answers.

Sounds familiar! About two days in I will start planning my gradual return to work and fitness, should it miraculously last. Last year I cleaned out the shed and drove all the trash to the filling by myself. The year before that I built a huge custom espalier for my balcony. Things that would...

Even the patients doing it privately had to have a formal diagnosis after the CCC. We were even reevaluated for other dxs before being offered the treatment.