„How can we be sure we are not gaslighting our patients? By remaining humble.“ Sehr guter Artikel einer betroffenen Ärztin über die nötige Haltung von Mediziner*innen gegenüber Patient*innen mit #LC, #MECFS, #PCVS et al. Anbei ein paar Zitate: 🧵 1/8

Artsen kunnen ook #ME, #Lyme of #longCOVID krijgen. @anilvanderzee.bsky.social vroeg me als cameraman-interviewer mee te werken aan deze documentaire. Dr. Laura de Vries vertelde me openhartig over haar studie en ziekte. Ze heeft ME, hetzelfde dat mijn zus Céline had. youtu.be/J0ywwLIfH_w?...

Another gem @theguardian.com The ever marginalized @paulgarnerwoof.bsky.social is (again) given a podium to conflate (his own) primary psych disorders with LC. A feat expected from this author, a 'psychosomatic' neurologist who's made similar mistakes. www.theguardian.com/society/2025... 1/5

This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵

Documentary “Hirschhausen & the Long Shadow of the Pandemic” now on YouTube with English subtitles. Footage from the #UniteToFight2024 conference @unitetofight.bsky.social @virusesimmunity.bsky.social & International ME/CFS Day @scheibenbogen.bsky.social t.co/XvNHvrnsPp

Cochrane’s decision to not update the erroneous 2017 exercise in ME/CFS systematic review is here, citing inadequate resources and insufficient new research. Of course, how you find and grade the research without finding and grading it seems very un-Cochrane to me. www.cochrane.org/news/update-...

That MID calculation for CIS seems dubious at best. They averaged a literature value with a calculated one based on data from a study that was not designed to give an MID. Big surprise that averaging them really brought down the threshold MID in the meta-analysis so they could say it was achieved.

Maybe why exercise isn't a panacea for dysautonomia is because of unrecognized PEM/PENE in that population. And the reason some people with apparent PEM/PENE respond exercise is because it's working on some level for dysautonomia--but potentially at the expense of the rest of the clinical picture.