According to a story from F3News, 77 year old Ron Davis has lived a life highlighted by incredible scientific achievement. He leads the lab that played a critical role in the development of gene sequencing technology that is currently being used by the Human Genome Project, which has the explicit goal of mapping all of the genes in the human genome and sequencing the base pairs of human DNA. However, Ron’s life is marked by tragedy: he spends every day helping to take care of his 35 year old son Whitney, who has severe chronic fatigue syndrome.
About Chronic Fatigue Syndrome (CFS)
Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is a rare condition which is most characterized by long term fatigue and other symptoms which severely impact a person’s ability to fulfill daily tasks. The exact cause of the syndrome is poorly understood. Risk factors may include family history, low physical fitness, old age, mental health problems, and allergies. Women are also more likely to get the syndrome than men. The characteristic symptoms is severe, persistent fatigue that has no definitive cause and is not resolved with rest; other symptoms include difficulty sleeping, worsening of symptoms following exercise, night sweats, sensitivities to certain foods, noise, or odors, muscle and joint pain, headaches, irritable bowel syndrome, and sore throat. Symptoms may appear gradually or suddenly, and in severe cases can leave a patient bedridden. Some treatments may include energy management strategies such as pacing and changes in diet. To learn more about chronic fatigue syndrome, click here.
Taking Care of Whitney
Whitney has an extremely severe case of the syndrome. He has been bedridden for years and has basically lost all capacity for interaction. He is fed by a stomach tube and hasn’t uttered a word in seven years. Ron is hoping that his research will ultimately lead to a discovery that can help improve Whitney’s chronic fatigue syndrome, a disease that is still poorly understood.
Ron and his wife Janet Dafoe work together each day taking care of Whitney: changing his IV bags, washing his feet, and so on. It is a ritualistic moment of their days that they never expected to experience. Taking care of Whitney means no more vacations, and the medical costs have begun to mount. Ron has dropped all of his prior project to focus on chronic fatigue syndrome.
Ron and a team of researchers he recruited have started to make some discoveries. They found that patients’ blood had a different stress response compared to a healthy persons. Hopefully, Ron and his team will soon find a breakthrough so that Whitney and other chronic fatigue syndrome patients can have better lives.