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I first had mono for a while without knowing it, and struggeling at swimming practice without being sure why. Then a couple of months later me and my family had a stomach virus or something like that. I had never been so ill in my life, I just remember sleeping for a week, only waking up to...

I struggle to fall asleep, but when I finally do I usually sleep 8-10 hours or more. Never refreshing sleep. The more I’ve exerted myself in a day the more difficult it is to sleep. In this case I usually just fall asleep 2-5 hours later than the day before, but if I’ve exerted myself...

wow @Adam pwme, another fantastic video! I’ve been thinking around and around about ways to introduce this topic to people I know, and this is perfect. Thank you so much for your hard work, you’re really skilled at this

Thank you so much for doing this again, @dave30th. It's the most comforting thing knowing you exist and seeing your work. I'm always grateful for the opportunity to donate to something so important as this

Same for children and teenagers being forced to keep attending school and after school activities when we got ill. Then we're told we got ME because of our good-girl-personality, when it was the adults around us that forced us to push ourselves and we had no other option. If they are going with...

thank you so much for making this! really well made

A big part of it for me is being very disabled but not perceived as needing help. Which means that almost nothing in my life gets done. Having dental problems and not making it to the dentist. Spending six months to get something done that I’d do in a day when I was well, and feeling like my...

@Subtropical Island great idea for a thread!

@Invisible Woman, those are such important points! And this goes for parents with sick children as well. It makes it hard for them to know how to help their child, or plan for the child’s future, or accept the child’s limitations and so on, if they haven’t been explained the reality of the...

I second this. For a lot of activites it takes 15 minutes just to set up the things needed, remember where I last left of and get into the right mindset for doing it. Switching between activities that often would mean I would barely be able to do anything, and just spending all my mental ability...

This is a very good point! Ukom looks good. I will definetly report to them. Thank you so much for the help and kindness, everyone. It feels so important to me to do something to contribute, but I'm not good at finding the options myself.

Does anyone know how I could report something like this, to someone that actually listens and doesn't just file it in a dark place? I really want to contribute so that this sort of thing doesn’t happen anymore, but my heart can’t handle it if I’ll just be dismissed or told that this is the...

I think I definetly have developed something like anxiety and depression. My mental state has been worse than I thought possible for a while. Mostly I’m just so traumatised by the norwegian healthcare system. I had a horrible experience seeing a psychologist last year. One of the reasons I...

I’m so grateful for Professor Saugstad’s engagement. I like that this was on the radio. He makes good statements and Helland seems to have none...? Other than ‘the psychological factors are important because I say so’.

Would it be possible to make a LP equevalent? Give it an equally pop-self-helpy name, have the same way of getting positive testimonies (making people say they are recovered even if they aren't. Maybe we could collect more testimonies than LP has even). The method could be walking around in...

Is the LP essentially just giving people, who have been told to isolate themselves in dark rooms without actually needing to, the permission to start doing things again? (If it's assumed that this is what patients are being adviced to do?) I really don't think doing too little is a common...

I relate so much

Does anyone know what usually happens with findings like these in ME research? Is it likely it will be attempted replicated, and would it be looked further into etc?

Yes! Thank you, will edit my post

I also started to push myself more after LP, even though I had already been pushing myself for more than two years without a diagnosis. I did the LP a few weeks after getting the diagnosis. The doctors that diagnosed me at the hospital said "You're young, you will recover soon. Keep going to...