Chronic fatigue syndrome affects between 836,000 to 2.5 million people in the United States, and 25 percent of them are confined to their bed. Earlier this year, the Institute of Medicine released a report acknowledging that chronic fatigue syndrome is a real and serious disease and renaming the disorder “systemic exertion intolerance disease” to better reflect its key symptoms.
The current issue of Palo Alto Weekly focuses on the disease and tells the story of local resident Whitney Dafoe, a promising 31-year-old photographer whose career was cut short when he began experiencing crushing fatigue, dizziness, gastrointestinal problems and dramatic weight loss:
Dafoe's disease has progressed to the point that he cannot talk, read or use the Internet. His joint pain became so severe some time ago that he could no longer walk and needed to use a wheel chair. Now he rarely gets out of bed. On a good day, he'll show his gratitude by pointing to his heart, his mother said.
His parents have stuck a few brief messages he's scrawled on notes to the door frame outside his room. The yellow squares of paper are the only way he can communicate these days.
"I don't know what to say. I just feel pretty hopeless about all this. I never get a break from bad things," he wrote on one note.
"It's so hard not being able to take care of my stuff. The feeling of helplessness it gives me is so stressful," another states.
Dafoe, who is also featured in the above video, is the son of Ronald Davis, PhD, a genetics researcher who was instrumental in the Human Genome Project and directs Stanford's Chronic Fatigue Syndrome Research Center. A second article details how Davis and colleagues are working to better understand the debilitating disease and develop diagnostic tests and treatments:
Davis and his team plan to use technologies developed for the Human Genome Project to sequence the entire genome of chronic fatigue patients, including 1,600 mitochondrial genes, more than 20,000 other genes and control regions that regulate genes. They hope to identify proteins that are found in immune cells, blood and spinal fluid; search for infectious agents in blood, bone marrow, spinal fluid and saliva and changes to gastrointestinal tract flora; and find evidence of autoimmune responses. The research could reveal DNA sequences that are altered in chronic fatigue patients.
The detailed approach is more comprehensive than that of other research, which has only looked at a fraction of the genes, according to the center's website.
Davis is working with numerous collaborators across many fields, hoping the collaborative effort will attract the best minds in their fields.
"This is probably one of the last major diseases we know nothing about. This is your last chance to be a pioneer," he said.
Previously: ME/CFS/SEID: It goes by many aliases, but its blood-chemistry signature is a giveaway, Chronic fatigue syndrome gets more respect (and a new name), Studies on ME/chronic fatigue syndrome continue to grab headlines, spur conversation, Unbroken: A chronic fatigue syndrome patient’s long road to recovery and Deciphering the puzzle of chronic fatigue syndrome