anilvanderzee.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

‼️Oproep: Beelden van mensen met zeer ernstige ME voor documentaire‼️ Voor een film "Doctors as Patients" waarin ik 4 artsen met een PAIZ interview, zoek ik mensen met zeer ernstige ME. Lees hier de rest van het bericht: m.facebook.com/story.php?st... #pwme #myalgicE #millionsmissing

submitted 1 day ago • 0 comments

Interessante video met onderzoeker Marjan Versnel over ME en ook het onderzoek naar Sjögrens. Er is nog geen samenwerking met het buitenland hoor ik. Is misschien het Charité interessant? Zie deze publicatie: www.mdpi.com/2077-0383/12... . youtu.be/iH4Hk_DTVdM?...

submitted 1 day ago • 0 comments

Another week, another bad exercise study. In this one, high drop-out rates and failure to mention that participants remained severely disabled after the interventions are among the issues: virology.ws/2025/02/28/t...

submitted 3 days ago • 1 comment

R.I.P.🕯️ An extraordinary advocate with V. Severe ME.

submitted 7 days ago • 0 comments

Leidt long covid tot de broodnodige erkenning van vergelijkbare onbegrepen ziekten, zoals ME/CVS? www.groene.nl/artikel/mist... Zeer lezenswaardig artikel, mede met dank aan @anilvanderzee.bsky.social en thisistheillme.bsky.social

submitted 13 days ago • 0 comments

"Vijf jaar na de coronapandemie hebben nog altijd honderdduizenden mensen #longcovid. Wacht hun hetzelfde lot als #MECVS-patiënten, die al jaren soortgelijke klachten hebben en veel onbegrip ontmoeten? Of leidt de aandacht voor LC tot erkenning van beide groepen?" www.groene.nl/artikel/mist...

submitted 13 days ago • 1 comment

Some things I've read recently...U.S. government removes Long Covid info @thesicktimes.bsky.social @betsyladyzhets.bsky.social, embedding Long Covid into RECOVER initiative, Dutch CBT/GET ideologues maintain high media profile @anilvanderzee.bsky.social virology.ws/2025/02/14/s...

submitted 17 days ago • 1 comment

1) After the recent passing of my (adoptive) father, I contemplated on the inevitability of illness, disability, decline, and, of course, death. Especially since I live with a chronic—and most of all, neglected—disease. I hope death is still many #pwme #myalgicE #millionsmissing #severeME

submitted 15 days ago • 2 comments

Amazing response by Rob Wust et al. that makes the response by Ranque et al. seem painfully silly. One way sad we still need to refute these nonsense claims, but on the other hand an awesome document why the deconditioning claim by the BPSers is nonsense. www.nature.com/articles/s41...

submitted 20 days ago • 2 comments

Auch wir finden Spikeprotein bei etwa 10% bis über 2 Jahre nach COVID allerdings genauso bei Gesunden wie bei MECFS und ohne Zusammenhang zur Symptomschwere.Das macht es unwahrscheinlich, dass es eine Rolle bei MECFS spielt. www.mdpi.com/2077-0383/14...

submitted 22 days ago • 2 comments

1) To my great surprise. CBT/GET promotor prof. Jos van der Meer is suddenly praising the work by cardiologist Linda van Campen & Frans Visser. Maybe he's finally learning something during his time as a member of the Dutch guidelines for "#MECFS"? JEEJAR write in the comments: "van de Meer writes

submitted 22 days ago • 2 comments

1) "I have read the news reports about the opening of #longCOVID clinics for children with mixed feelings." "For me, considering colleague pediatricians who have specialized in #PAIS’s on an international level since #LongCovidKids #KidswithME #pwme anilvanderzee.com/what-the-med...

submitted 23 days ago • 1 comment

🟦 GRAAG VERDER VERSPREIDEN 🟥 WAJONG PETITIE ! ✅ geef deze petitie een flinke boost, ik steun ‘m van harte ✅ het beoordelingscriterium van de wet Wajong2015 moet hoognodig worden herzien ✅ ontsla het UWV van zijn functie als toekomstvoorspeller link naar de petitie 👉 petities.nl/petitions/he...

submitted 26 days ago • 2 comments

Ik heb met gemengde gevoelens de nieuwsberichten gelezen over de opening van #longCOVID klinieken voor kinderen. Lees mijn blog waarom: anilvanderzee.com/wat-de-media... #pwme #longCOVID #LongCovidKids #KidswithME #millionsmissing #CGT #GET #CBT #GET #harm

submitted 26 days ago • 3 comments

Here's my piece for @thesicktimes.bsky.social about Cochrane's broken promises to ME/CFS patients over its crappy 2019 exercise therapy review. thesicktimes.org/2025/02/04/r...

submitted 27 days ago • 5 comments

Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.

submitted 29 days ago • 2 comments

We can ask questions in the chat. Participants are requested to wear a mask. The first session is moderated by Dr @molbaas.bsky.social who's there on behalf of stichting long covid and who's also in Pcnn.

submitted 29 days ago • 1 comment

UPDATE 1.Extended version of CBT and graded exercise therapy studies have proven that #ME and #LongCovid are physical diseases, yet no one is aware of that is now available online. 2. PDF is now also available. Open access, so free of charge. www.frontiersin.org/journals/hum...

submitted 34 days ago • 2 comments

This is quite shocking but not surprising. Let that sink in!! "Improvement among patients with earlier PCS was associated with [...] not attending a rehabilitation programme." journals.plos.org/plosmedicine... journals.plos.org/plosmedicine...

submitted 37 days ago • 3 comments

Please sign and share the petition to stop a patient with Very Severe ME being forced to take inappropriate antipsychotic meds and detained because they can’t get out of bed. bit.ly/linepetition

submitted 43 days ago • 8 comments

Sorry?!? #BPS #harm #trauma #appologize #sorry #pwme #myalgicE #millionsmissing PS: subtitles included. youtu.be/jPIYlYddkUk?...

submitted 47 days ago • 9 comments

Professor Dr. med. Hans-Christoph Diener, emeritierter Professor für Neurologie in Essen und einer der prominentesten Neurologen im deutschsprachigen Raum, hat eben im Streamed-up explizit betont, dass Long Covid NICHT psychosomatisch, sondern ORGANISCH ist. 🧠

submitted 46 days ago • 9 comments

youtu.be/jPIYlYddkUk

submitted 47 days ago • 0 comments

Well done to Mark Vink on getting another piece published: this one has the provocative title, "CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that" www.frontiersin.org/journals/hum... #MEcfs #CFS #PwME

submitted 47 days ago • 12 comments

Sorry?!? #BPS #harm #trauma #appologize #sorry #pwme #myalgicE #millionsmissing PS: subtitles included. youtu.be/jPIYlYddkUk?...

submitted 47 days ago • 9 comments

New short overview piece with links "What is myalgic encephalomyelitis?" by @thesicktimes.bsky.social & @longcovidjustice.bsky.social ( @mileswgriffis.bsky.social , @betsyladyzhets.bsky.social & @sunsopeningband.bsky.social ) longcovidjustice.org/what-is-me/ #MyalgicEncephalomyelitis #PwME

submitted 51 days ago • 2 comments

In Huisarts Nu, het wetenschappelijk tijdschrift van Domus Medica, verscheen een artikel dat kort de belangrijkste info uit de ME/CVS-richtlijnen samenvat, zodat huisartsen de aandoening vroeger kunnen herkennen. t.co/gsvD6GuyuQ #mecvs #mecfs #mecfsawareness

submitted 73 days ago • 1 comment

"The results of the MR analysis revealed no causal relationship between MDD and #MECFS. The pleiotropy test revealed that causality bias was improbable, and no evidence of heterogeneity was found among the genetic variants." www.nature.com/articles/s41...

submitted 55 days ago • 3 comments

I finally got myself to order a copy of the TV show Spoorloos (14-05-2001), where I got to meet my biological mother. It was an incredible moment, of course, but now with #severeME in isolation also bitter sweet and hard. Read more and watch here 👇 anilvanderzee.com/meeting-my-b...

submitted 58 days ago • 4 comments

2025...let's hope it will bring us some effing scientific breakthrough. Wishing you all a happy less crappy New Year! 😊

submitted 60 days ago • 3 comments

Excellent study by Hunt and Blease calling out the unethical gaslighting present in CBT for ME/CFS and “medically unexplained symptoms”. jme.bmj.com/content/earl...

submitted 61 days ago • 0 comments

1) Here it is, our overview of the most interesting ME/CFS studies of 2024. If you think we’re missing an important one, feel free to post it as a comment below 👇 mecfsskeptic.com/202...

submitted 64 days ago • 7 comments

Longcovidklinieken open, maar coalitiepartijen in de Tweede Kamer blokkeerden verder onderzoek naar behandelingen van long covid. Vanuit de medisch-wetenschappelijke wereld klinkt nu kritiek: een belangrijke kans is gemist om binnen een paar jaar de meeste patiënten zorg te bieden. nos.nl/l/2549727

submitted 66 days ago • 0 comments

Lieve #PAIS community, We zijn een tijdje van de radar geweest, maar zo aan het eind van het jaar willen we heel graag nog wat van ons laten horen omdat we willen laten weten dat we aan je denken. Voor jullie deze Eindejaarsboodschap 🌟👇🏻 (video deel 1/2) #LongCovid #MECVS #Lyme #QVS #PostSepsis

submitted 71 days ago • 4 comments

New from Sweden: Adverse effects of CoenzymeQ10 in the treatment of patients with #ChronicFatigueSyndrome / #MyalgicEncephalomyelitis (ME/CFS) www.researchsquare.com/article/rs-5... "Most often the symptoms are mild. Gastrointestinal symptoms, rashes & insomnia were common" #MEcfs #CFS #PwME

submitted 73 days ago • 5 comments

Interesting take by Christian Puta on the red blood cell deformation and oxygen delivery. www.wissenschaft.de/gesundheit-m... It is however not exclusive to SARS-CoV-2 as we've also seen deformation in people with ME in the 1980-90. me-pedia.org/wiki/Leslie_... .

submitted 73 days ago • 0 comments

"Updating the review is simply not a priority. Cochrane either doesn’t want to do it, or has been pressured not to. Or perhaps both." virology.ws/2024/12/17/t...

submitted 75 days ago • 0 comments

Cochrane tells ME/CFS patients that they can go fuck themselves: virology.ws/2024/12/17/t...

submitted 76 days ago • 4 comments