As we replied to the same authors with this commentary last week, patients are more than validly fed up with this level of amateurism, which is hidden under a veil of good intentions and superficial termimology, and is supported by conservative medical and monetary interests. Time for change.

Here is our Rapid Response to that hugely problematic BMJ review of treatments for #LongCovid Delighted to have contributed with @ellecarnitine.bsky.social, @fvrhijn.bsky.social, @lauravictorine.bsky.social, and Xandra Westerhuis We need to learn from the history of #MECFS

„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.