By the #JohnVsJonVsME Core Planning Group: Eliza Charley, Emily Fraser, Julie, Katie Klocksin, Melissa Mazur, María Richardson
In a crisis-filled world, breaking through the noise requires creativity, strategy — and, occasionally, a really good meme. This is precisely why the #JohnVsJonVsME campaign began.
Inspired by George Monbiot’s piece in The Guardian last March calling the history of mistreatment of people with Myalgic Encephalomyelitis (ME) the “greatest medical scandal of the 21st century,” #JohnVsJonVsME started with patient advocates connecting on social media around a common goal: encourage late-night TV show hosts John Oliver and Jon Stewart to cover the outrageous history of ME.
As Monbiot wrote, ME still has no approved treatments decades after being first recognized. This lack of scientific progress is too often explained as patients unwilling to get better or an illness too complicated to understand. But in reality, an intentional campaign has obstructed scientific breakthroughs and cures and stigmatized the illness.
As a result, medical professionals don’t just neglect people with ME but often only offer them harmful treatments like cognitive behavioral therapy or graded exercise therapy. COVID-19 has added millions of new people with ME to the millions already sick, making coverage of this scandal imperative now more than ever.
Given their ability to tackle difficult, controversial, and misunderstood topics, Oliver and Stewart seemed best positioned of comedic-journalists to cover this medical scandal. Advocates from different countries have independently arrived at the dream of ME coverage by these media icons over the years. Our group formed when a few of us recognized this common goal. We knew Oliver and Stewart could cover the topic with nuance, humor, and grace, while educating about why the false narratives about ME must be corrected and the harmful treatment of people with ME must end.
In May 2024, as part of ME Awareness Month, we launched a two-part social media campaign on Twitter/X to act as a Trojan horse: conveying the seriousness of the topic but using a playful medium, like the Jo(h)ns themselves are known for. We wanted to both build on the work of prior advocacy and also use humor and creativity to disarm the initial reaction of fear and apathy that can often come when people first learn about ME.
We were inspired by “laughtivism” a la Srdja Popovic — a form of advocacy often used to shift oppressive narratives using a combination of laughter and activism, while engaging members of a community to play along (literally). The use of play encourages people who might otherwise not see themselves as “activists” to participate.
Our metaphorical horse is a fictitious competition pitting the two great late-night hosts against each other: who will cover the Greatest MEdical Scandal first? Before launching this competition component, Mexican ME advocate María Richardson asked members of the community to catalog relevant sources and clips highlighting the serious and untold history of ME using the hashtag #GreatestMEdicalScandal. People could participate asynchronously, from bed, between bouts of limited energy or symptom crashing (thanks to post-exertional malaise or PEM), and across multiple continents.
With professional backgrounds in media, we understood that television writers and producers need proof that there is enough footage and documentation to tell a story well. Our small group alone could not archive what was already available online, so we needed the help of the larger global community. Floods of video clips, news articles, policy documents, research papers, interviews, public records documentation, and patient stories soon flowed in through thousands of posts.
We then created a landing page to bring together key resources from those posts and to explain why now, more than ever, this history of ME needed telling.
Next came a social media storm directed at the two Jo(h)ns. The campaign called for MEmes (memes about ME), songs, and witty posts, with each poster highlighting which Jo(h)n they thought would cover the #GreatestMEdicalScandal first. We wanted to break out of our community’s bubble, while showcasing some of the incredible artistic and comedic talents of its members. We asked the community to share these creations (or our templates) with the #JohnVsJonVsME and #GreatestMEdicalScandal hashtags during a specific time period on May 31, 2024 — to celebrate the end of ME Awareness month.
Australian actress and ME advocate Eliza Charley kicked off that first campaign and hosted a live Space on X. We reached our goal of the hashtags trending quickly and for longer than expected, with the hashtags trending across Europe, Australia, and the U.S., in some places for almost 24 hours. Importantly, we trended in a topic outside of the usual fare for patient advocacy: “Entertainment.”
After receiving positive feedback from the community — asking us to “commit to the bit” (while pacing, of course) — we created an official @JohnVsJonVsME account on Twitter/X, then Instagram, and later Bluesky. We ran another campaign in early August for the Olympics, including a global 24-hour relay to get the hashtags trending again. British national team rower and ME activist Oonagh Cousins started that event with videos recorded at the Paris Olympics.
For Halloween, we held a three-day Scary Science MEme-ference to highlight the incredible research being done to understand ME, which is often mislabeled as a “mystery” or “unknown” (actually, underfunded or misunderstood). Science communicator, Halloween enthusiast, and ME advocate Dianna Cowern headlined that event. Our most recent event was styled as a virtual international music festival for Valentine’s Day, to show our love for the Jo(h)ns and boost reach on Instagram via love songs.
The beauty of the campaign is the “crowdsourced creativity.” Though each of us has limited units of energy (or “spoons” in chronic illness speak), we work together to become greater than the sum of our parts. As we often highlight, “our collective spoons are our greatest asset.” The project is run by a core planning group (authors of this piece) tackling asynchronous planning across three different countries and taking turns to lead throughout the ups and downs of PEM.
Each round is joined by a wider group of community members who: brainstorm ideas; provide valuable insight and feedback; and create sample MEmes, write template posts, and image ALT text for a toolkit offering low-spoon participation. Members of the community then contribute to each event’s success with every like, reshare, and tag. Every participant makes a difference, regardless of their spoon level that day.
Surprisingly, each event can feel like a party — a window of time to be online together as a team and a community — especially during milestone holidays that can be especially challenging for people with ME. Instead of experiencing holidays in isolation due to the harsh limitations of this illness, we meet together, with purpose and commitment, to reclaim our laughter and enjoy each other’s creativity, all while amplifying the need for broader media coverage of a tragic and scandalous history impacting millions of lives.
Beyond raising awareness, the campaign also offers a space to process our grief through humor and art. This energy-limiting disease leaves us with few ways to channel our grief; MEme-making and/or sharing on social media can be an accessible and light-hearted way for most community members to participate, while always remembering our more Severe and Very Severe peers who may not be able to create right now.
While we are all quite ill, for now, we still intend to “commit to the bit.” Like everyone with ME, Long COVID, and other similar diseases struggling to manage without enough medical care, support pathways, or public health guidance for reducing infections, it is hard to consider formal lobbying routes.
We remain focused on the Jo(h)ns, but don’t foreclose advocacy to other media icons and/or Hollywood advocates asking them to get the word out about #GreatestMEdicalScandal. More coverage of #GreatestMEdicalScandal has already begun in the past year: a segment on late-night German “Jo(h)n” Jan Böhmermann’s show in September and one on SciShow last month. Every accurate story about ME shifts the narrative and moves us towards better research and treatment.
We are grateful to be able to engage in advocacy in a way that brings us joy and builds community. Hopefully we’ll soon see the story of ME get the wide coverage and attention it’s been due for decades now.
Thank you to all who have participated to date and, if you are interested in joining us for future campaigns, follow @JohnVsJonVsME on X/Twitter, Instagram, or Bluesky. For any journalists interested in covering #GreatestMEdicalScandal, please see the resources we’ve collected on our landing page or search through our treasure troves on X/Twitter, Instagram, and Bluesky.
We are grateful to be able to engage in advocacy in a way that brings us joy and builds community. Hopefully we’ll soon see the story of ME get the wide coverage and attention it’s been due for decades now.
This essay was a collaborative effort by the #JohnVsJonVsME Core Planning Group: Eliza Charley, Emily Fraser, Julie, Katie Klocksin, Melissa Mazur, and María Richardson.
- Eliza Charley (Melbourne, Australia & Florence, Italy) – writer and actor on indefinite pause due to ME relapse.
- Emily Fraser (Oakland, CA) — documentary filmmaker, cinematographer, & college lecturer with mild ME that turned moderate to severe due to COVID-19.
- Julie (Virginia) – mostly bedbound and cognitively impaired from severe ME after COVID-19. Former: engineering student, mechanic, fabricator.
- Katie Klocksin (Rockford, IL) – former journalist and outdoor enthusiast, living with mild ME 2014-22, made moderate to severe by COVID-19 in 2022. Currently 95% bedbound.
- Melissa Mazur (Philadelphia, PA) – lawyer on pause, former federal law clerk; first-wave COVID-19 long-hauler who now meets the criteria for mild/moderate ME.
- María Richardson (Mexico City) – writer, teacher, and once-upon-a-time museum educator with moderate ME who can no longer teach, can hardly write, and hasn’t been able to visit a museum in ages.
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[…] as it is, that we don’t have treatments, that we don’t have a cure, is because of the historical neglect and underfunding of those conditions — it really reinforced, to me, early on, the importance of […]