Investigating ME for 40 years. The Why "Indispensable" Osler's Web “A relentless, highly persuasive expose" "Groundbreaking" "A major documentary account"
New York, USA
Joined August 2009
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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-…
Funniest headline of 9/02/26 in NJ newspaper ‘Daily Mail’
“Hundreds of Millions Trapped in post Viral Nightmare as Scientists Race For Cure” 😂😂😂😂
Untold morbidity. Unspeakable suffering. A pandemic ignored. "The Why: The Historic ME/CFS Call to Arms." A case history of what went wrong.
Kindle, Paperback, Audible
amazon.com/dp/B0CY7F4FQ5?lv=…
Hillary Johnson Author, Journalist retweeted
I often find my life with ME/CFS unreal. Feels like a bad dream. Am I *really* living like this? Surely I‘ll wake up at one point and leave the apartment again, buy groceries, prepare food, dance, swim, see so many streets, squares, squirrels, dogs, rivers, the sea & touch trees?
nytimes.com/2026/07/28/us/po…
Tony Fauci's diary, released by his enemy Sen. Rand Paul, reveals the rich, retired NIH infectious disease chief, (highest paid fed employee) is dazzled by his own fame + celebrity adoration during Covid. Fame sometimes seems as important to him as Covid.
Hillary Johnson Author, Journalist retweeted
PRIME Webinar 3 on post-exertional malaise (PEM)
actionforme.org.uk/prime-wor…
actionforme.org.uk/wp-conten…
Screenshot from the latest Science for ME weekly update
#MEcfs #LongCovid @DrMaureenHanson @DrMark_Faghy @marjoneaw @sunsopeningband
ALT UK PRIME Webinar 3 on PEM Thursday 30th July, 2026 2-5 pm GMT Talk 1: Post-Exertional Malaise - a perspective from the online ME/CFS community of Science for ME. Maree Candish Talk 2: The pathophysiology of PEM, what we know, but importantly, what we don’t? Mark Faghy Talk 3: Failure to capture PEM distorts evidence in ME/CFS and Long COVID trials. Marjon Wormgoor Talk 4: How to Eat an Elephant: Contemporary Scientific and Clinical Approaches to Post-Exertional Malaise. Todd Davenport Talk 5: Molecular signals of PEM. Maureen Hanson Announcement | Programme (PDF) | Thread
Okay. But why pitch it as potentially "key driver" of symptoms? This sounds like more downstream damage. Cause of ME (and its symptoms) remains elusive 40 years on. Why does this disease exist? Where are the virologists? Nothing else has delivered cause.
medicalxpress.com/news/2026-…
Hillary Johnson Author, Journalist retweeted
Yesterday in Vienna, we had the pleasure of bringing together international and Austrian expertise in ME/CFS research.
Together with our Scientific Advisory Board member @DrMaureenHanson (Cornell University, USA), we introduced the new WE&ME research call in partnership with WWTF, as well as the new WE&ME Emerging Leader Award.
Advancing ME/CFS research requires collaboration, scientific excellence and long-term commitment. More details coming soon.
#MECFS #WWTF #Research #Austria
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.
Hillary Johnson Author, Journalist retweeted
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!
xitter.cf/mecfsanna
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.
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
Hillary Johnson Author, Journalist retweeted
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.
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.
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.
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?
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!
"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…
Hillary Johnson Author, Journalist retweeted
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?
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
Hillary Johnson Author, Journalist retweeted
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…
