Ironic to see a response saying these hypotheses and findings are 'easily understated', as the literature has been riddled with similar, overrepresented and overgeneralized FND rhetoric for decades, more so when based on a single, and not very convincing, HBOT study. A 🧵: 1/9

Andreas Strube@astrube.bsky.social · 2w ago

1/ Laura Kim, @scheibenbogen.bsky.social and colleagues show that thalamic hyperconnectivity in ME/CFS shifts toward healthy-control patterns after HBOT, most strongly in patients who improve. But what is the thalamus actually computing in this circuit? link.springer.com/article/10.1...

Still hoping you reach out @awaisaftab.bsky.social! Is your cool interview with @dianeoleary.bsky.social on psychiatry's conflation on dualism, and your hesitation there to call out MUS for what it scientifically is, 1/10 www.psychiatrymargins.com/p/reconsider...

Reconsidering the Place of Dualism in Medicine and Psychiatry: An Exchange with Diane O’Leary

[Redux]

psychiatrymargins.com

Seems like someone got lured into amplifying proponents' Calimerotactic of crying 'stigma', - when decades of 'research' still haven't produced a decent mechanistic rationale, let alone evidence - instead of looking at the bigger historical picture. @AlanLevinovitz A 🧵 1-25

WIRED@wired.com · 2mo ago

Six years since the height of the pandemic, the scientific community remains baffled by long Covid. But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.

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.

Winslow Santé Publique@winslowsp.bsky.social · 4mo ago

La psychologisation des #CovidLong, ça suffit. Action non-violente de patient·es CL de Winslow et @actioncovidlong.bsky.social lors d’une conférence européenne sur le COVID long organisée par les Pr Lemogne/ Ranque, de l'unité Casper 👇

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

Long COVID needs real therapeutics: time to move past disproven approaches

bmj.com

„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

When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine

pmc.ncbi.nlm.nih.gov

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?...

Doctors as Patients (with subtitles)

YouTube video by Anil about ME

youtu.be

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

The number of people with chronic conditions is soaring. Are we less healthy than we used to be – or overdiagnosing illness?

Are ordinary life experiences, bodily imperfections and normal differences being unnecessarily pathologised? One doctor argues just that

theguardian.com

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. 🧵

Hilda Bastian@hildabast.bsky.social · 2y ago

I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day: absolutelymaybe.plos.org/2025/01/24/w... #mecfs

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-...

Update on ‘Exercise therapy for chronic fatigue syndrome’

cochrane.org

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.

Eric Topol@erictopol.bsky.social · 2y ago

A systematic review of 24 randomized trials for #LongCovid www.bmj.com/content/387/... open-access No drug, diet, or device intervention has supportive evidence for efficacy. CBT, rehab provided some relief of symptoms (moderate certainty). We're still in desperate need for a validated treatment!

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.