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@Manganus everything else is upside down with this illness, so maybe it shouldn't be surprising that I get more sleepy while the entire country is getting more awake and energetic :rofl: ETA: this is certainly the scenario that best explains the very similar timing from one year to another!

Not to mention the fact that many of us didn't know we had ME, didn't even know it existed, and still got sicker and sicker while trying to continue working out and staying active. I believed I wasn't being healthy enough for 8 years before I got so ill I was diagnosed. Which actually WAS a...

@OverTheHills got it:) I seem to do better from May and through September, but this is Norway (and the last three summers have not been great) so we could probably count all those five months as late spring-ish. In the really hot summers before that my ME was still fairly mild and very...

@Mij it is early days for pollen, but Alder and Hazel already have «moderate levels». I don’t spend much time outdoors, though:p I just can’t for the life of me come up with any better ideas:) maybe I’ll just settle for coincidence! @OverTheHills I do better in the summertime, but it is these...

Probably. Last year 2-3 weeks. Still in the middle of it now. ETA: I think I've read somewhere that many who tried rtx became more sensitive to allergies during/after treatment. That might be it. I'm not worried about it, just curious about this random change in condition for such a short...

@Mij that is the only thing that seems to make sense with the timing, but what is so weird is that I don’t feel bad or sick at all, I just have this overwhelming need to sleep all the time that is not normally present. I don’t even have the sore throat or itchy eyes that normally show up at...

I wrote in the notes that I get emotional exhaustion as well, where I don’t have the energy to process or filter emotions or reactions. Not fun, and not fun to be around:blackeye::rolleyes:

These last few days I’ve taken to my bed, not feeling bad but just so very very tired and sleepy. I’m not normally sleepy, and although I’m often fatigued and without energy reserves I would not say I normally feel tired. I did have a busy week before this and it could theoretically just be...

My experience was more like “after four months of no longer being completely bedbound my OI got a tiny bit better”, haha. Overall, he paints a fairly accurate picture of the isolation and even all the things that can be missing in a relationship that is so close but just not possible, even if...

Very true!

Can’t see why not, it’s all for the same cause in one way or another:) In one way it would be great to have a separate campaign that is more directly geared towards donating to science/Tuller, but I also think it would be easier to get some traction if it’s one shared message. Easier to support...

Maybe pooling our efforts and use #CanYouSeeMEnow could be a good idea.

60% :)

I would also have liked to pick more than one description of the progression of the illness. For me it started out fluctuating and mild enough that although something was clearly wrong, ME was not even considered. Then I stopped having remissions and it got progressively worse for years until...

Done:) I finished it earlier today, but it was very nearly too much for one day. Glad to do it though, good questions. I also included pem from social interactions, as well as any form of transport, in the notes. I found it hard to rate the symptoms, as they all seem equally horrible to me:bored:

I think, in the world of hashtags and social media, that it’s more important to be easy to remember and spell than to be grammatically correct. That is, you sometimes have to cheat a little to get a hashtag that is both understandable and easy. So #Justice4ME might technically point to justice...

Thank you. I can afford to give a bit more (and have!), but the fact that you actually thought of this means a lot:)

I like #Justice4ME - simple, to the point, flexible for many different uses and almost impossible to get wrong or misunderstand:)

I think percentage of yearly funds spent on administrative costs is more interesting than salaries. At least that’s one of the key things to consider if what you are interested in is effective altruism. As an example, Foundation Against Malaria (if I remember the name correctly) is considered...

Thanks for asking, @Inara - I postponed it until January to avoid overdoing it right before Xmas:) With the traveling and the stress of being evaluated like that it’s better left for a month when nothing else is happening:thumbup: