Hillary Johnson Author, Journalist

Untold morbidity, unspeakable suffering. A pandemic ignored. "The Why: The Historic ME/CFS Call to Arms." A case history of what went wrong. amazon.com/Why-Historic-C…

Pretty euphemisms that grate: "Recovery journey," to describe the experience of ME. It's not a journey, not even figuratively. It's a dead stop. And for most, the reality of recovery is little more than an ever-receding dream. "Lived experience," also dreadful. Try: sick as a dog

Saw my in-laws for two hours this week for the first time in 10 years. They are elderly and realistically this might be the last time I see them. There are people in this country who are responsible for preventing the development of treatments for ME, and breaking families apart.

Die Situation ist so absurd: Du sitzt zu Hause, dein Körper ist dein Gefängnis, er bestraft dich für jede Aktivität und du weinst, weil du NICHTS lieber willst als raus, leben, aktiv sein. Und gleichzeitig schreiben alte Männer über den Zusammenhang von ME und Depressionen.

Infectious disease is a critical medical specialty, given ever-evolving transmissible diseases, but fewer doctors choosing to enter field, according to Axios. In 2026, MDs filled just 61% of fellowships offered. Is germ theory losing ground? Certainly not a priority for RFK Jr.

@Primewave96 Will people please stop torturing animals to make videos for X ?

Thank you for helping this little one, Good work sir !!!! 👏👏👏👏👏

Why am I unable to applaud when, in 2026, I see white-haired doctors revealing they have just discovered--to their complete surprise--that myalgic encephalomyelitis is a terrible disease?

Well, on further thought, there was a time when you never saw this in papers or anywhere else, because almost no one grasped that ME was actually a disease. Maybe a case of 'be careful what you wish for'

Is there any other disease in which every new observation must serve double duty, first as new observation, second as proof the condition actually exists? Is it necessary to endlessly perpetuate this stupid garbage in papers in 2026? Just stop!

And a zoom in on the NIH ME/CFS funding levels over time

US gov has since 1980s adhered to a policy of withholding funds for ME, a disease afflicting, conservatively, 3.3 million (mostly women) in US alone. This is FACT. My '96 book chronicling origins of this corruption, Osler's Web, is a white collar crime story. Where is the rage?

From El Pais: When things get out of hand at the lab: Hundreds of accidents expose the ‘catastrophic’ risk of dangerous pathogen leaks english.elpais.com/science-tech/2…

One quarter of US oil imports come from Venezuela. I wrote about particulate matter air pollution and cardiac disease for Rolling Stone in 1997. Cardiac connection was just being recognized back then.

The Venezuelan oil tanker US seized this week is filled with oil which, like all Venezuelan oil, contains extremely high levels of vanadium, a heavy metal. When burned, vanadium is released in particulate matter that causes COPD, asthma, cardiac disease and other serious problems

The final version of our paper describing plasma proteins in ME cases and controls before and after maximal exercise is now available online. Proteomics demonstrates male/female and ME/healthy sedentary differences. doi.org/10.1016/j.mcpr…

@saffronandsky Why do some ME researchers threaten to stop conducting ME research if some small number of ME patients don’t like their research? Why so thin-skinned? Why are PWME required to be docile and fawning? Any other very sick population required to write thank you notes—or else?

Why do some ppl with ME get triggered when a researcher threatens to stop doing research unless patients stop offering critical feedback? 1/

@oslersweb The embrace of the hybrid term "ME/CFS" by the CDC in 2017—poorly defined by the politically controlled IOM report—was a brilliant PR move. Now no one can talk about ME without almost always including its imaginary conjoined twin—the CDC's invented nonentity "CFS."

Severe and very severe ME/CFS patients are the sickest patients I’ve ever seen - even compared to septic transplant or end-stage cancer patients. The unrelenting suffering and lack of research or definitive treatments puts severe ME/CFS on another level. Nothing compares...

We don't pay Flat Earthers to Work for NASA. We don't pay Creationist to study Hominids. So why should the German Government pay ME/CFS Biomedical Denialists to study ME/CFS? #MECFS @Karl_Lauterbach

Deutschland wird 500 Mio in Erforschung von MECFS investieren! Mit dem Programm „Dekade gegen Postinfektiöse Erkrankungen“ startet der Versuch, die Krankheit zu heilen. Mit aus meiner Sicht guter Aussicht auf Erfolg. Ein wichtiger Tag für alle Betroffenen spiegel.de/politik/karl-l…