As accounts of those suffering with mysterious and lingering medical complications months after an initial COVID-19 diagnosis have multiplied over recent months, the term “fatigue” has resurfaced in mainstream health reportage along with ridiculous and tired debates about whether long-haul illness and its symptoms are real. (Spoiler: They are.) There could be no better time for Tracie White’s book The Puzzle Solver, recently published by Hachette, which tells the story of some of the original chronic illness “long-haulers” while putting to bed the myth that if an illness is unknown or puzzling it must be psychological in origin.
The subject of White’s book is MECFS, aka myalgic encephalomyelitis or ME, a mysterious and particularly insidious illness — that sometimes (but not in all cases) develops after viral infection —which affects more than 20 million people worldwide and leaves approximately one quarter of those who suffer from it divorced from their pre-illness lives, unable to work, and bed-bound. To tell the story of those known as the “millions missing,” White partners with Dr. Ron W. Davis, a legendary and highly-respected Stanford scientist and Director of the Stanford Genome Technology Center famous for his work on the Human Genome Project who abandoned his work in genomics in order to devote all of his time to searching for a cure for MECFS. White, an award-winning science writer and journalist, was compelled to tell the stories of those with chronic illnesses after suffering a late-term miscarriage that left her devastated and with chronic insomnia that she still suffers from today. She describes being driven at first by simple curiosity and then by the question: “How do they carry on?” The question led to an assignment writing about a father who was racing against time to save the life of his severely ill son. The father was Ron Davis; his son: Whitney Dafoe, a photographer and former world traveler living with the severest form of MECFS who has become the community’s poster-boy.
Whitney is now 37 years old. He has lived with MECFS for a decade. He believes that he contracted the illness around 2011. By 2015, he was bed-bound. He lives with and is cared for by his father Ron; his mother Janet Dafoe, a clinical psychologist with a Stanford PhD; and his sister, Ashley. White describes her visits to the household: Whitney is emaciated. He cannot walk or talk or eat. He cannot tolerate even the slightest lights and sounds. His head is shaved because he cannot wash his own hair. He uses a stomach tube to receive nutrition and can only communicate minimally with gestures on rare days with the help of Ativan, which only lasts for a brief time. White recalls Davis telling her about the day that he entered Whitney’s room to find that his son had spelled the word DYING out in Scrabble letters for his parents to find.
White offers a stark portrait of the contrast between Whitney’s pre- and post-illness life that makes the devastation of this illness obvious. Readers see Whitney in bed, suffering, but they also see him in the years before his illness, riding a motorcycle in the Himalayan Mountains, on a mountaintop with a Buddhist monk. White describes her shock when, completely by chance one day, she happens upon a moving long-form essay written by one of Dafoe’s friends — or was it girlfriend? — best-selling memoirist Stephanie Land (author of Maid) that describes an intimate month they spent together in Alaska telling each other secrets and feeding lichen to caribou at two a.m., before Whitney fell ill. It is a heartbreaking account that now serves as a reminder of all that MECFS has stolen from Dafoe and those who love him — a reminder of all that has been stolen from the millions suffering from MECFS and their loved ones.
Described as a living death in its severest form — the form experienced by Whitney and far too many others — MECFS has received little media attention over the years, perhaps with the exception of a flurry of reportage around the time of a large outbreak in Incline Village in 1984 and an upswing around the time of the release of Jen Brea’s autobiographical documentary Unrest in 2017. It has been ignored and misunderstood. Patients have been told that it is all in their heads, that they just need to exercise. They have been denied and damaged. White and Davis note that the condition attracts abominably low funding for research in comparison with other less-debilitating illnesses. The recent development of a nanoneedle by Davis’s team — groundbreaking because it provides diagnostic evidence, finally, of the biological basis of the disease — was funded primarily, he says, by patients. Hopes are high that this will change.
MECFS has suddenly found itself in the spotlight because of its stunning similarities to long-haul COVID. While not all with MECFS cite post-viral illness as the origin of their troubles, a significant number do. Like those with “long Covid,” they describe themselves as being perfectly healthy one day and severely disabled the next. Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, and Dr. Tedros Ghebreyesus, Director of the World Health Organization, have expressed concerns that COVID-19 may lead to an uptick in the spread of MECFS. MECFS patients who have long felt forgotten or ignored grieve the increase in numbers of MECFS sufferers while wondering if this will finally be the catalyst that shifts thinking and speeds them towards a cure. Davis, affectionately called “Superman” by his son and those in the MECFS community, has announced that he will be studying parallels between the two. Whitney, meanwhile, in those brief moments when treatments allow him to do so, shares hopeful messages with other people with MECFS via Facebook and Twitter with the assistance of his family. He encourages them to hang on.
On New Year’s Day a new message appears on Whitney’s Facebook page: First, a hashtag: #ENDmecfs2021, then, a letter: “I am really hoping this will be the year we are all released from this nightmare. Things are all coming together for that to be a legitimate possibility. 2021 could be the year that gets recorded in the history books when an obscure, misunderstood illness not only became legitimized but millions of people came out of the woodwork all around the world proving to have whatever ME/CFS is called then and get cured all at once. And the history of our suffering finally saw the light of day as we all moved into the light ourselves and rejoined the world of human beings once again.”
White, who has a history reporting the “neglected stories” of marginalized groups from Cambodian refugees to Native Americans, hopes that her book will call attention to Whitney’s story, to the growing MECFS community and the enormous problem of insufficient funding for research that has slowed progress in the development of diagnostic tools and the search for treatments or a cure. “Everyone knows someone with a mysterious illness that goes unmentioned and gets ignored,” White writes. “This is an attempt to lift the curtain over those sick people who go unseen, untreated, and forgotten.” As the pandemic continues on and the number of people disabled with MECFS and long-term medical conditions grows, it is imperative that, this time, we don’t look away.
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