Joined August 2009
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- Followers 4,482
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Pinned Tweet
5 Dec 2023
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-CFS-…
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Messaging yesterday from prez and WHO officials around Hantavirus. "It's hard to catch." No, it isn't. medicalxpress.com/news/2026-…. Per usual: officials act as if "public panic" would be worse than spread and moderate their message accordingly.
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Hillary Johnson Author, Journalist retweeted
May 4
So shocked & saddened. Another young life lost to #severeME. Anna was so beautiful inside out and I fondly remember chatting to her about ‘Black Mirror’ as we were both fans. Fly Free Anna 💙🦋
#rememberME
🖤#RIP Anna Löcher *10.4.2000 - †10.4.2026🖤
🥀Anna - an ihrem 26. Geburtstag wurde ihr junges Leben ausgelöscht, seit 2017 litt sie an schwerstem fortschreitendem #MECFS
🕊️jetzt ist sie wieder mit Mama und Oma vereint
💔Anna - du fehlst!
x.com/mecfsanna
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Lay press stories about people with ME sometimes state that ME "can last at least six months." Thank the CDC for ignorantly insisting that Dr. and patient must wait 6 months before diagnosis. Barbaric. ME is so unique, I suspect experienced MDs can have 90% certainty in minutes.
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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
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Hillary Johnson Author, Journalist retweeted
Apr 5
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.
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Hillary Johnson Author, Journalist retweeted
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.
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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.
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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?
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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!
Jan 13
"Knowing there is a measurable cellular dysfunction helps us recognise ME/CFS as a legitimate medical condition and improves confidence in patient care."
Press release from Griffith University.
news.griffith.edu.au/2026/01…
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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'
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Hillary Johnson Author, Journalist retweeted
27 Dec 2025
And a zoom in on the NIH ME/CFS funding levels over time
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27 Dec 2025
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?
27 Dec 2025
NIH research funding for ME/CFS for has been dramatically lower for many years than other comparable diseases with lower total disease burden in the U.S.
ME/CFS has the highest estimated burden (in DALYs) of those shown, and yet funding is barely off the floor.
#MECFS
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Hillary Johnson Author, Journalist retweeted
19 Dec 2025
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-t…
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12 Dec 2025
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
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12 Dec 2025
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.
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Hillary Johnson Author, Journalist retweeted
12 Dec 2025
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.mcpro.2025…
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Hillary Johnson Author, Journalist retweeted
25 Nov 2025
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?
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Hillary Johnson Author, Journalist retweeted
20 Jun 2020
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."
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20 Nov 2025
RT @DrMichaelScoma: Severe and very severe ME/CFS patients are the sickest patients I’ve ever seen - even compared to septic transplant or…
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Hillary Johnson Author, Journalist retweeted
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
ALT We don’t pay Flat Earthers to Work For NASA. We don’t pay Creationists to study Hominids. Neurologists, Psychiatrists, and psychologists deny the Biomedical Evidence of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). They waste precious resources and harm patients. So why would the German government pay to support a ME/CFS biomedical denialist? Please fund Large Scale ME/CFS Biomarker studies and fast track a ME/CFS Diagnostic Blood Test.
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