December 1, 2025

What an amazing surprise‼️‼️

A short interview with my BFF Frans at the PAIS-protest today, the 30th of November.

Frans is also my caregiver now, but I rarely get to see him, and for sure not really talk to him properly. Even though he is in my house at least once a week.

If we do “see” or "talk" it is usually because it is functional. He quickly hands me something, which is already a big overexertion. Just talking like we used to, just having fun, is not really part of it anymore. And we clearly both miss it.

It was therefore so incredibly nice to see this interview with Fred Verdult, who is himself a chronic Lyme patient. Fred and I quite recently chatted about how I cannot see or talk to anyone. That I don't tolerate people in the same room with me. That I cannot receive a hug. That all these exertions makes me more ill. He was shocked to hear the amount of disability. This interview shows how this affects my friendship with Frans as well.

It is important that Frans also explains what it is like to be a caregiver and that illness is not only about the person who is ill. We have over half a million people with PAIS in the Netherlands, but with all the caregivers, friends and family members, the impact of PAIS is much greater than people might expect.

Anyway, it was very special to see this. A dear friend or family member can be so close and yet so far with this illness, but this interview felt like a kind of connection we have not had in ages.

Thank you for this very precious surprise, Fred, and thank you Frans for everything you do. Without you there would not be me. I would've lost my sanity years ago and without you I could not achieve what I do in advocacy for ME. So your help goes beyond just helping me. 

Let's hope we find a solution for this hell hole.

Miss you.

Hero!

Ade! ♥️😍❤️

#PAISprotest #niethersteld @NietHersteld #pwme #myalgicE #LongCovid #lyme #QVS #postsepsis #PAIZ #millionsmissing #pwme #severeME #photophobia #hyperacusis #POTS #banPEM #art2cureME #canyouseeMEnow #balletdancer #zorgbetervoorME #chronicillness #science