Whitney Dafoe

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Whitney before becoming ill with ME

Whitney Dafoe is the son of Dr. Ronald Davis and Dr. Janet Dafoe and is severely affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Prior to becoming very severely ill with ME/CFS, Dafoe was an adventurer and photographer who traveled extensively. His journeys took him to all 50 states, India, Nepal, and Ecuador.[1]

Unrest[edit | edit source]

Whitney has a very severe form of ME. He can no longer speak nor handle contact with anyone but his parents due to visual dysfunction

Whitney Dafoe was one of several patients with severe ME who featured in the film Unrest, which also included interviews with his mother, psychologist Dr Janet Dafoe, and his father, scientist and researcher Dr Ron Davis.

After the release of Unrest[edit | edit source]

After the release of the movie Unrest, public interest in Whitney Dafoe increased, with Google suggesting people search frequently searching for his obituary or death - despite the fact he remains alive despite being so severely ill[2] - as well as seeking information about Ativan, also known as Lorazepam, a drug that was shown to briefly help him in Unrest.[3] In summer 2019, Whitney finally met ME advocate and film maker Jennifer Brea.[3]

In December 2019, at Whitney's request, his sister Ashley Haugen, created a twitter account for him, followed by a Facebook page in January 2020.[2][4]

Improvement in health[edit | edit source]

In June 2020, Whitney posted on Facebook to say that he was experiencing what seemed to be a temporary improvement, and was able to write and communicate using his cell phone briefly.[5] He stated that he didn't know the reason for the improvement, but it may have been linked to an increased dose of Cortef (hydrocortisone) or Abilify (aripiprazole).[5] Dafoe continues to rely fully on a feeding tube for nutrition and hydration, and can't tolerate the noise of others speaking without being sedated.[1][6]

The Puzzle Solver[edit | edit source]

In 2021, writer Tracie White and Dr Ronald W. Davis, Whitney's father, published the book The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole his Son, describing Whitney's battle with myalgic encephalomyelitis and his father's research to find a cure.[7]

The Living Death[edit | edit source]

In 2022, Whitney Dafoe was the Gold Winner at the European Photography Awards for his documentary entry The Living Death, a series of photographs of his experience living with severe ME.[8]

Articles and interviews[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 Archibald, Timothy (2016). "The puzzle solver". Stanford Medicine. Retrieved January 20, 2020.
  2. 2.0 2.1 "Whitney Dafoe (@DafoeWhitney)". Twitter. Retrieved January 20, 2020.
  3. 3.0 3.1 Brea, Jennifer (June 3, 2019). "Meeting Whitney". Medium. Retrieved January 20, 2020.
  4. "Whitney Dafoe". Facebook. Retrieved January 20, 2020.
  5. 5.0 5.1 Dafoe, Whitney (June 11, 2020). "Whitney Dafoe". Facebook. Retrieved June 23, 2020.
  6. 6.0 6.1 Dafoe, Whitney (April 27, 2021). "Extremely Severe ME/CFS—A Personal Account". Healthcare. 9 (5): 504. doi:10.3390/healthcare9050504. ISSN 2227-9032.
  7. White, Tracie; Davis, Ronald W. (January 31, 2021). The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son (1st ed.). New York: Hachette Books. ISBN 9781549177545.
  8. "Documentary - The Living Death". European Photography Awards. Retrieved August 24, 2022.
  9. Dafoe, Whitney (July 10, 2015). "Invisible Illness - Stories of Chronic Fatigue Syndrome". YouTube. Palo Alto Online.
  10. Tucker, Miriam (October 5, 2015). "With his son terribly ill, a top scientist takes on chronic fatigue syndrome". Washington Post. Retrieved October 13, 2018.
  11. "Scientist dad searches for cure for sick son, Newshour - BBC World Service". BBC. October 19, 2015. Retrieved October 13, 2018.
  12. Tucker, Miriam (November 4, 2015). "Chronic Fatigue Syndrome Research Gains Funding, And Controversy". NPR.org. NPR. Retrieved October 13, 2018.
  13. Land, Stephanie (March 24, 2016). "Therein Lies your Calling". Stepville. Retrieved October 13, 2018.
  14. Dafoe, Whitney (May 2, 2016). "Whitney Dafoe Palo Alto Online 2015 video - short". YouTube. Mary Dimmock.
  15. Land, Stephanie (October 24, 2016). "The Love of a Thousand Muskoxen: Grieving a Love Lost to Time and Sickness". Longreads. Retrieved October 13, 2018.