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I have had bloodstests and a full neurological exam by a student (not because I needed it, just for teaching purposes). Only thing they found were hyporeflexia in my knees and positive trandelenburg sign.

https://www.volkskrant.nl/kijkverder/v/2025/postcovid-covid-corona-patienten~v2184703/ "667 days in the dark" Someone has made a reddit post that has already gotten a lot of traction as well: https://www.reddit.com/r/thenetherlands/s/TrYJ0d0hHC

I imagine it would tell them whether their results correlate to the results of FUNCAP and DSQ PEM. I like their idea of trying to make a standardized simple way of identifying the differences in PEM between people. Its definitely not there yet, but I think I can see their goal and I can see...

I think they just mean PEM.

Took me about 30 minutes (including breaks) to complete. Especially the questions where you have to put specific amounts of how severe your PEM is and how long they last was trickt, as I do not constantly track my PEM. I had to check my calender to make any sense of it, I think the option to...

Im surprised how much more common long covid seems to be in people under 25! I knew there was a difference, but never would have expected it to be this big. However, I am even more surprised to see the rates of long covid grow so much. March 2025, 2,4% of young people had long covid. In june...

I know someone who helped with the organization, so if anyone has questions I can pass them along. Will be there myself as well!

Since when is chronic cystitis also a functional disorder? I still don't have any idea of what a functional disorder is supposed to be. If a functional disorder is something that effects the function of the body, wouldn't almost any disease be functional?

Is it not normal to have the leg/sometimes arm deep aches with normal flu? I have always called it "flu muscle pain", because before ME onset I would get the exact type of muscle pain during any virus. I wonder if knowing what causes the flu pain could explain a lot about me/cfs as well.

I too suspect it is likely there is some circulation issue in me/cfs, or at least in some of us. My parents are able to tell me when I'm in PEM better than I am, because I turn extremely white, hours later I start getting pain in my legs whenever they are exerted, and later on I feel like I am...

Maybe acute viral infection, as he talks about it staying latent in the bone marrow Never heard of viruses staying in the bone marrow, is that proven?

I think a different word would be ideal, but I think it will be very difficult to find something that both  feels correct but also avoids making assumptions (things with "energy", for example) or has different meanings (like pacing) On the other hand, I wonder whether we need this explained so...

All BPS people seem to not understand this. The only thing they are good at is making you stop doing anything fun or relaxing, and spend all of that energy on work/school. "Wow you are so much better now!"

https://mecvs.nl/nieuws/onderzoek/nos-therapie-voor-kinderen-met-uitputtingsziekte-me-cvs-in-twijfel-getrokken/ <-- summary of what Sander Zurhake wrote. And the reaction of "veilig thuis" to the articles

Would "some smells make you feel sick" be pointed at smell sensitivity (during PEM or migraines, all smells feel overwhelming and bad, just like light and sound sensitivity), or more at the "MCS" type of allergy like reactions?

I often feel the only reason that  most pwME don't see themself as having a functional problem is because treatment of functional problems (mostly CBT, from what I have seen) often actively makes us more ill. It always makes me a bit sad when pwME think their problems are properly explained by...

This is so absurdly high. I do think there needs to be good, clear and effective ways to find out whether there is child abuse like this going on. However, you would think just talking to the child itself would at least be part of that... I was also able to function fine at school. They even...

#niethersteld is organizing a protest for all PAIS

I know that post cancer fatigue is approached from a very psychosomatic view by doctors I went to.

Horrible wording!!;