"And therefore never send to know for whom the bell tolls; It tolls for thee." God damn human society

Heute war mein Wahlkreisabgeordneter der CDU kurz zu Besuch. Termin lief gut, er wird auf Nina Warken (die er lange und gut kennt) zugehen und mit ihr über Mecfs sprechen und sich in den Haushaltsverhandlungen einsetzen.

Øystein Fluge's talk about a pilot trial of daratumumab for ME/CFS has been uploaded youtube.com/watch?v=e80fRw…

Long COVID/myalgic encephalomyelitis has destroyed my leg muscles. Even if I am still alive by the time a treatment is discovered, I believe I will need an exoskeleton to walk again. But right now, they are still imperfect and expensive.

LDN, stellate ganglion block, and GLP-1 receptor agonists will be discussed in September during the RECOVER-TLC workshop. How many more people must die until Long COVID and ME/CFS are taken seriously? When will this idiocracy end?

“Gates Foundation commits $2.5 billion to 'ignored' women's health” In fact, The Gates Foundation ignores Long COVID, ME/CFS, and POTS, which disproportionately affect millions of women and derail their lives. gatesfoundation.org/ideas/media-ce…

As a bedbound patient with severe Long COVID, I am not eligible to listen to the Keystone Symposia because I have no money to pay for either the livestream or the recordings.

In my opinion, Cohen Center provider manual contains quite a few controversial points. No wonder MDs call us "Lyme sect" when researchers refer to viral parts as "reservoirs". The document reads more like an advertisement for the clinic and its personal approach than a manual.

That's what medical students, residents and physicians can find out about ME/CFS from one of the most popular medical textbooks.

St.Louis neurologists: among 203 patients, diagnosed with small fiber neuropathy, fatigue and muscle symptoms were higly prevalent doi.org/10.1111/ene.70…

New: English-language version of donation page for a Norwegian non-profit foundation dedicated to supporting biomedical research on ME/CFS. Currently looking for funding for important drug trial [Daratumumab] by respected research team me-foreningen.no/om-oss/stott-m… #MEcfs #PwME

From RECOVER-TLC meeting LDN RCT for "post-COVID Fatigue Syndrome"🫠, the University of British Columbia

Chronicles of ME/CFS and Long COVID "mystery" Patients have preload failure and ⬇️systemic O2 extraction. SFN is highly prevalent. But no one is going to study the mechanisms and trial immunotherapies apart from useless LDN so people will be rotting in their beds🫠

Elamipretide would probably be a better option to trial for ME/CFS and Long COVID than yet another LDN trial or useless stellate ganglion block. science.org/content/articl…

It looks like CSL Behring has terminated a clinical trial of HIZENTRA (subcutaneous immunoglobulin) in patients with POTS😐

Dear rheumatologists! If someone with fibromyalgia has post-exertional malaise, it is likely myalgic encephalomyelitis. In that case, slower progression of exercises is not evidence-based and can be harmful. #ACR25