Disability activists online and the worlds they're helping to build
Illustrations by Hatiye Garip
by Simon Spichak
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Feeling abandoned by medical professionals and public health officials and now having the internet at their fingertips, people with chronic diseases and disabilities have found community online. Since then, individuals with conditions like Parkinson’s, myalgic encephalomyelitis (ME/CFS), and long COVID have organized patient-centric research programs, clinical trials, and public health awareness campaigns fueled by the online communities they’ve helped to establish and thrive.
Centering the experiences of women with early-onset Parkinson’s
Richelle Flanagan, a registered dietician in Northern Ireland, was three months pregnant when she noticed her handwriting was shrinking. Concerned about the strange symptom, she went to her doctor, who diagnosed her with early-onset Parkinson’s disease — which causes cells in her brain to die over time, leading to tremors, slowed movement, muscle rigidity, and other symptoms.
Flanagan isn’t who people think of when they imagine someone with Parkinson’s disease. “People don't realize that the image of Parkinson's portrayed as an older white man suffering isn’t accurate,” Flanagan said. “Around 30 percent of people with Parkinson's are under 60, and 40 percent of people with Parkinson's are women.”
Women also have a more challenging time getting an accurate diagnosis than men, according to the Parkinson’s Foundation. Most research studies only look at older individuals with the disease, typically recruiting patients over 70, excluding women like Flanagan with early-onset Parkinson’s. However, she found groups of other women with early-onset Parkinson’s scattered worldwide through various Facebook groups, Twitter, and other social media applications.
After giving birth to her daughter, Flanagan noticed that her symptoms would worsen periodically. “My Parkinson's symptoms were worse around my menstrual cycle, and I noticed a lot of women mentioning the same issue,” she said. Flanagan surveyed over 200 women on Twitter and Facebook, discovering they also had a similar experience. This information could prove useful for people learning to manage their symptoms and trying to understand what to expect when they’re newly diagnosed.
After sharing these findings, Flanagan connected with Parkinson’s researchers through social media, culminating in her contribution to a peer-reviewed scientific paper in 2022 discussing how research had neglected the symptoms and experiences of younger women with Parkinson’s. Later, she founded My Moves Matter, a company that developed an app that women with the early onset form of the disease can use to track their symptoms and connect with others facing the same challenges.
Fine, I’ll cure it myself
Hatiye Garip
Dr. Tess Falor and Dr. Tamara Romanuk are scientists who had their careers sidetracked by myalgic encephalomyelitis (ME/CFS) — a debilitating disease that causes brain fog, exercise intolerance, extreme pain, fatigue, and a susceptibility to other infections. Falor Romanuk, and others with ME/CFS have a substantially lower quality of life than those with lung cancer, schizophrenia, and rheumatoid arthritis. But even though ME/CFS affects as many as 2.5 million Americans, it is still dismissed by doctors too often and severely underfunded. That means that despite this common disease, neither Falor nor Romanuk could receive effective treatments or easily participate in clinical trials.
“Tamara and I met on Twitter. We ended up coming across each other in a thread about science and ME/CFS,” Falor said. Both Falor and Romanuk had experienced a similar event after taking antibiotics for another infection, which they called a “remission event,” leading to acute euphoria and a long-term improvement in everyday symptoms. “When we started talking about this idea to try to recreate these remission events, people got really excited about it.”
Intriguingly, while Falor and Romanuk hypothesized that altering the bacteria within the gut through various antibiotics and supplements could help treat their symptoms, federally funded research in the US found links between gut bacteria and ME/CFS.
Eventually, this project turned into Remission Biome — a patient-led experiment that received mentorship from scientists. After running a short proof-of-concept trial on themselves and a few other individuals earlier this year, they’ve moved on to running a larger patient-led clinical trial with a cohort of 50 people they connected with through social media worldwide.
Falor adds that coverage of Remission Biome in other outlets like The Guardian’s Scientific Observer has also helped patients explain and legitimize their condition to medical professionals.
A social media response to a massive public health failure
Hatiye Garip
Tracey Thompson, a Toronto woman in her 50s, contracted COVID-19 early during the pandemic, but never recovered. As many as 10 percent of people initially infected develop long COVID — an incurable condition with debilitating symptoms including pain, brain fog, exercise intolerance, and immune system dysregulation.
But by 2023, most public health agencies stopped discussing long COVID risk, masking, and other measures to prevent infection. This is also an equity issue as Black, Indigenous, and other racialized communities are at a higher risk of contracting COVID-19 and thus developing long COVID.
In response, Thompson started Black Indigenous Racialized COVID Health (BIRCH) on social media to spread the message through graphics that could be widely shared online, as well as connecting and spreading these public health messages within communities across Toronto, Los Angeles, and Puerto Rico through physical poster campaigns. “I wanted really simple ways of getting information out to people,” Thompson says. “Being able to connect with people who are out doing, you know, public work in their neighborhoods in their communities has been amazing. It certainly makes you feel less isolated.”
To combat the loneliness and isolation often experienced by those living with these diseases, people who have been neglected and excluded from traditional medical research and messaging have leveraged social media to develop their own solutions. In the face of long COVID — or any other number of other chronic conditions — patients are finding long-term support online. We still have a lot of work to do to close the numerous healthcare gaps that continue to stand between patients and treatment, but building accessible, digital communities is a good place to start.