Prominent Patient Advocates and Content Creators

ME/CFS advocacy is largely driven by patients themselves, often working with extremely limited energy. The individuals listed here represent a fraction of the patient community dedicating their scarce functional capacity to improving conditions for all patients. Many severely ill patients contribute via social media, writing single tweets or posts that may represent their entire energy expenditure for a day. ## Filmmakers and Documentarians

0.1 Jennifer Brea

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  • Background: American documentary filmmaker and activist. PhD student at Harvard when sudden illness left her bedridden.
  • Key work: Unrest (2017)—Sundance award-winning documentary, Emmy-nominated, shortlisted for Academy Award. Available free on YouTube (May 2023). Produced largely from bed, directing remotely with crews worldwide.
  • Advocacy: Co-founder of #MEAction. Delivered highest-rated TED Talk at 2016 TED Summit (nearly 2 million views, 25+ languages).
  • Personal journey: Later discovered craniocervical instability (CCI) and underwent spinal fusion surgery, experiencing significant improvement—highlighting ME/CFS subgroup heterogeneity.
  • Website: https://www.jenniferbrea.com/

0.2 Dianna Cowern (Physics Girl)

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  • Background: Science educator, YouTube channel with 2.8+ million subscribers.
  • Illness: Contracted COVID-19, developed Long COVID/ME/CFS. Currently completely bedbound, unable to care for herself. Also developed MCAS.
  • Advocacy: 12-hour livestream (July 6, 2024) showing “a day in her life” with severe ME/CFS. Co-hosted by Ian Hecox and Simone Giertz. Raised $150,000+ for Open Medicine Foundation. Livestream became top post on r/videos (27M subscribers).
  • Impact: Brought ME/CFS awareness to mainstream audience unfamiliar with the condition.
  • Platform: YouTube: Physics Girl; Twitter/X: thephysicsgirl

1 Writers and Bloggers

1.1 Cort Johnson

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  • Background: Developed ME/CFS/FM in 1980s while in Environmental Studies program at UC Santa Cruz. MS in Environmental Studies from San Jose State University (2000).
  • Key work: Founded Phoenix Rising (2004)—became most visited ME/CFS website by 2010. Left to found Health Rising (2012), broadening focus to include fibromyalgia. Produced 1000+ comprehensive blogs on ME/CFS and FM.
  • Recognition: ProHealth’s Advocate of the Year (2015). IACFS/ME Special Services Award (2016). Described as “the quintessential patient advocate, breaking more news about this illness than many professional journalists.”
  • Website: https://www.healthrising.org/
  • Social media: Twitter/X: CortJohnson

1.2 Jamison Hill

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  • Background: Former bodybuilder and certified personal trainer at Sonoma State University. Developed ME after mononucleosis in senior year (2010).
  • Illness severity: By age 28, bedridden, unable to speak, eat solid food, or elevate body. Wrote on cellphone wearing tanning goggles to block light.
  • Publications: When Force Meets Fate: A Mission to Solve an Invisible Illness (2021 memoir). Written for The Washington Post, The New York Times, Los Angeles Times, Men’s Journal, Vox, VICE, and others.
  • Media: Featured in Forgotten Plague documentary, Netflix series (2018), WBUR Modern Love podcast, Dax Shepard’s Armchair Expert podcast.
  • Current status: Improved with anti-virals, hydrocortisone, IV saline—not fully recovered but able to tell his story.
  • Website: https://jamisonwrites.com/

1.3 Whitney Dafoe

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  • Background: Son of Dr. Ron Davis (Stanford geneticist) and Dr. Janet Dafoe. Former adventurer and photographer who traveled to all 50 states, India, Nepal, Ecuador.
  • Diagnosis: ME/CFS diagnosed 2010.
  • Current severity: One of the most severe ME/CFS cases documented. Cannot speak. Cannot tolerate contact with anyone but parents due to visual dysfunction. Fed by tube directly into stomach. Hasn’t spoken in years.
  • Advocacy: Despite severity, maintains blog, Facebook page, Instagram documenting life with severe ME/CFS. Won Gold at European Photography Awards (2022) for documentary series “The Living Death.”
  • Impact: His illness catalyzed his father’s complete redirection of research focus: “I decided to terminate everything I was working on before Whitney got sick. Everything is ME/CFS now.”
  • Website: https://www.whitneydafoe.com/
  • Patreon: https://www.patreon.com/whitneydafoe

1.4 Other Notable Bloggers

  • Suzan Jackson (Live with CFS): Has ME/CFS since 2002; both sons also developed ME/CFS at ages 6 and 10. Blog focuses on living well despite chronic illness.
  • Mary M. Schweitzer, PhD (Slightly Alive): Former history professor. Maintains ME and CFS Information Page with essays, reports, and conference summaries.
  • Naomi Whittingham (A Life Hidden): UK-based, severe ME since age 12. Does interviews and supports brother Tom Whittingham’s marathon fundraising for ME Research UK.
  • Laura’s Pen: Blog covering Lyme disease, ME/CFS, and endometriosis awareness.
  • Super Pooped: ME/CFS awareness through art, crafts, and humor.

2 Science Communication and Research Analysis

These sites go beyond personal blogs to provide systematic, critical analysis of ME/CFS research papers—serving as an accessible bridge between primary literature and the patient community.

Written by two long-term ME/CFS patients (one homebound for over 12 years, the other bedbound in a care home since contracting ME after bacterial pneumonia in 1998). The authors do not have a professional background in academia or medical science but bring careful, skeptical analysis to published research, with particular attention to statistical methodology and study design. They explicitly state no preference for any particular hypothesis or treatment, aiming to evaluate what holds up after closer scrutiny. Notable for detailed annual research reviews (e.g., “2025: looking back on a year of ME/CFS research”) and critical examination of high-profile papers. The site demonstrates that rigorous critical thinking about research is not exclusive to credentialed scientists.

Founded by Cort Johnson (see above). While listed under bloggers, Health Rising also functions as a science communication platform, providing detailed analysis of new ME/CFS, fibromyalgia, and Long COVID research papers, often within days of publication.

3 Researchers Who Are Patients or Family Members

3.1 Ron Davis, PhD

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  • Position: Professor of Biochemistry and Genetics, Director of Stanford Genome Technology Center.
  • Background: Pioneered technology that powered the Human Genome Project. Over 64 biotechnology patents.
  • Personal connection: Son Whitney has very severe ME/CFS.
  • Research pivot: “I decided to terminate everything I was working on before Whitney got sick. Everything is ME/CFS now.”
  • Leadership: Director of OMF Scientific Advisory Board. Established Stanford ME/CFS Collaborative Research Center (2013). His work helped prove ME/CFS is a biological disease.

3.2 Tom Kindlon

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  • Background: Very active young man (soccer, tennis, cricket, cross-country) until ME at age 16 (February 1989).
  • Current status: Housebound for 22+ years. Uses wheelchair. Full-time carer: his mother Vera.
  • Expertise: Studied Mathematical Sciences at Trinity College Dublin before dropping out. Extensive analysis and publications on PACE trial and harms of graded exercise therapy. Work available on ResearchGate and PubMed.
  • Role: Assistant Chairperson, Irish ME/CFS Association.
  • Recognition: OMF certificate of merit. Described as “a leader in the global ME/CFS community” who “initiated patient-led efforts to take a scientific approach to analyzing ME/CFS research.” Nominated for honorary degree at Trinity College Dublin.

3.3 Andy Devereux-Cooke

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  • Role: Patient, founder of Science for ME forum.
  • Research: Research investigator on DecodeME study—demonstrating patient partnership in research.

4 Celebrity Advocates

  • Laura Hillenbrand: Author of Seabiscuit and Unbroken. Candid about ME/CFS struggles and medical misunderstanding.
  • Karin Alvtegen: Scandinavian author of psychological thrillers (Missing, Betrayal). ME/CFS has significantly shaped her life and career.

5 Euthanasia and End-of-Life Discussions

The severity of ME/CFS has led to difficult conversations within the patient community about quality of life and end-of-life options. Some patients with very severe ME/CFS have publicly discussed or pursued medical assistance in dying in countries where it is legal (Belgium, Netherlands, Switzerland, Canada). These discussions reflect the profound suffering experienced by the most severely affected patients and the lack of effective treatments.

  • Samuel (Austria, 2004–2026) – Samuel developed very severe ME/CFS following a COVID-19 infection. In his final public statement, posted to Reddit 12 days before his death, he described his condition: “I must lie in bed 24 hours a day and cannot move too much, it must be permanently dark because I cannot tolerate light. I wear double hearing protection because I also cannot tolerate sounds. I cannot watch television or videos for even a second, as moving images overwhelm my nervous system and trigger unbearable suffering. I cannot listen to music or podcasts. I cannot even talk to my own mother, who cares for me, because listening is too exhausting and speaking has become completely impossible. I must communicate with pen and paper.” He described the physical suffering as “like drowning and burning at the same time” and noted that any exertion beyond his energy limits caused crashes leading to permanent deterioration. He highlighted systemic failures: no approved medications exist for ME/CFS, Austria has no dedicated treatment centers despite 1% of the population being affected, most physicians do not recognize the disease, and the pension authority (PVA) called patients “charlatans and freeloaders.” Samuel chose medical assistance in dying in Austria, passing away on January 30, 2026—his 22nd birthday. His final message: “ME/CFS kills!” (ME/CFS TÖTET!)

    Sources: Original Reddit post: https://www.reddit.com/r/Austria/comments/1qg8oit/; News coverage: https://www.heute.at/s/samuel-21-ist-tot-er-starb-an-seinem-geburtstag-120159259