The race to see who will cover
People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have been neglected and even abused for decades by governments and medical systems. ME or ME/CFS is a complex, chronic neuroimmune condition that has been recognized by the World Health Organization since 1969 but still has no FDA-approved treatments. 17 to 30 million people around the world live with ME, many developing it after an infection. This disease is horrendous and criminally underfunded for the disease burden.
Despite early and ever-growing evidence of organic abnormalities, ME was falsely blamed on hysteria solely on the basis that it affects women at higher rates than men.
While governments & medical systems no longer use the term hysteria, preferring to hide their beliefs under more palatable words like psychosomatic, biopsychosocial, functional, etc, their attitudes haven’t changed. Their unscientific dogma has deprived people with ME of effective research & treatments for decades. Now around half of people with Long COVID meet the diagnostic criteria for ME, making the issue more urgent than ever.
We are at a loss for why the media has been mostly ignoring this massive issue that is devastating millions of lives around the world.
A small group of us have come together to form a social media campaign to encourage either John Oliver or Jon Stewart to bring this awful history to light with the power and balm of humor and raise awareness so we can finally start getting people with ME, including those who develop it through Long COVID, the research and care that are long overdue.
Phase 1 of the campaign:
We asked people in the community on X (formerly Twitter) to use the Hashtag #GreatestMEdicalScandal to share interesting clips, information, and personal stories that they would want the press to see when working on stories about ME/CFS.
Phase 2 of the campaign:
Getting journalist and show writer eyes on this story through the humor and creativity of the community using the hashtag #JohnVsJonVsME
A few helpful resources on the Greatest MEdical Scandal to get you started…
Videos
What happens when you have a disease doctors can't diagnose, by Jen Brea, Ted Talk, June 2016
The Days with M.E.: Anil van der Zee’s short documentary about daily life of living with M.E.
The Golden Girls: Dorothy’s Struggle With CFS/ME – Awareness Video
Invisible Illness - Stories of Chronic Fatigue Syndrome
Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Dr. David Kaufman
Interview with Guardian columnist George Monbiot on the mistreatment of ME/CFS patients, by David Tuller
Dialogues for a neglected illness: A Wellcome Public Engagement Fund Project
Articles
‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal, by George Monbiot, The Guardian, Mar. 12, 2024 (NOTE: what precipitated the #GreatestMEdicalScandal hashtag)
The Long Covid Revolution, by Fiona Lowenstein and Ryan Prior, The Nation, April 11, 2023
Fatigue Can Shatter a Person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience, by Ed Yong, The Atlantic, July 27, 2023
Other Narratives
How federal research continues failing people with myalgic encephalomyelitis, part I: The long and twisted history of psychologizing myalgic encephalomyelitis and post-acute infection syndromes, by Janna Moen, PhD, Mar. 18, 2024
Thirty Years of Disdain — How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis, by Mary Dimmock and Matthew Lazell-Fairman, Dec. 2015
Contact us at: contactjohnvsjon@gmail.com