Anil van der Zee on LinkedIn: The risks of autoimmune- and inflammatory post-acute COVID-19 conditions:… (2024)

"Experts who reviewed the contracts and project documents say the agency set itself up for failure by not selecting scientists fluent in the post-infectious chronic diseases that predate the Covid-19 pandemic and are now commonly diagnosed alongside long Covid."#longCOVID #pwme #PEM #PESE #millionsmissing https://lnkd.in/eRtUVmqM

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An interesting Dutch preprint where the transfer of IgG from the blood of people with #LongCovid caused altered behavior in mice - but this varied depending on the LC subgroup.Thanks to all the authors. This is the type of work we love to see from the Netherlands! Looking forward to seeing the results in people with ME as well.

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Three years into the National Institutes of Health's RECOVER initiative, this #LongCovid research program has moved slowly and not met its initial goals. Considering the way the NIH failed to adequately invest in ME I'm unfortunately not surprised... https://lnkd.in/eq79U6g4

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It's the last day of ME Awareness Month. I've seen several people expressing that they're dreading this period because of the small amount of change we see. Some people have been ill for 50+ years. Another ME Awareness whatever passes, and still, the outside world seems not to really care. ME is globally still underfunded in comparison to the disease burden, and due to a lack of education, it's still often misunderstood by many healthcare providers. At this present moment, people are being abused in hospitals, and in recent times we've lost quite a few people to euthanasia because of their immense suffering. There are enough reasons to feel hopeless because when will this ever end? There's no doubt that the suffering I see and experience frustrates and pains me. I, too, can feel hopeless at times, but the amount of injustice this community has had to deal with also motivates me to keep fighting. I desperately want this to change. I think as a community we've already achieved so much and we're continuing to do so. Especially since the pandemic, despite the suffering COVID-19 has caused, things have changed for the better for people with infection-related chronic illnesses as a whole. People often ask me how I keep holding on. There are many reasons why, but from a young age, I felt that I had something to say or share with the world. I was not the best dancer in terms of flexibility, strength, or technique, but call me delusional—I still felt my voice mattered and was worth sharing. The same goes for advocating for ME. I don't have a medical or scientific background, and yet I try to make sure my voice is heard. I'm a strong believer in the ripple effect, and I see the waves of change growing. I'm writing this message because it doesn't matter how small and insignificant your voice may feel. Even if nobody seems to listen or care, I believe that the more people collectively keep speaking up, the louder we can be, and the more change we'll see. If not for us, then for the next generations to come. I therefore wanted to remind you that your voice matters too. It matters to ME. For everyone with ME. We need you!Anil 💙#pwme #myalgicE #millionsmissing #MEawarenessday #MEawarenessmonth #MEawarenessweek

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Klinisch bewijs voor een verband tussen het darmmicrobioom en ME: een retrospectief overzicht. #pwme #myalgicE #millionsmissing https://lnkd.in/eesAeGwj

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