The Challenge: He is A Father, A Caregiver and A Scientist Trying to Save his Son and Others With ME/CFS or Chronic Fatigue Syndrome

 

Ron Davis and his gene-sequencing technologies were mentioned years ago in The Atlantic alongside Elon Musk (SpaceX) and Jeff Bezos of Amazon fame. Since then, Davis has amassed over 30 patents for his technologies.

Davis, now age 77, recently explained to CNN that he has put aside projects that he had been working on and is now literally devoting his entire life to caring for his son and finding a cure for myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS.) General translation is “painful inflammation of the brain and nervous system.”

It took years and many visits to doctors before discovering that Davis’ son, Whitney, has ME/CFS. Whitney, now age 35, has been bedridden for almost ten years. He is completely immobile, receives nourishment through a feeding tube and lost his ability to speak five years ago. His parents attend to his needs throughout the day and night.

It Began When Whitney Was 24 Years Old

In 2008 Whitney was living in Nevada working as a political campaign volunteer and supporting himself as a photographer. He began to experience extreme fatigue and was unable to work.

At that point, Whitney moved in with his parents and eventually became bedridden. His mother, Janet Dafoe, is a child psychologist. Dafoe explains that his care and feeding must be performed almost like a ritual. Any deviation to the routine can cause severe stomach pains making it impossible for his parents to use the feeding tube.

If Whitney sees words printed on a medicine bottle, or even on his parent’s tee shirt, the energy used by his brain to process even one word will cause him to “crash”.

The ritual is performed six times every day. It begins at 2:30 pm attaching the IV. The feeding tube that sends nutrients into his stomach is hooked up next. The last session takes place about 2:30 am and consists of applying ice to Whitney’s stomach to soothe his severe digestive pains.

The Institute of Medicine estimates that between 836,000 and 2.5 million people in the U.S. have ME/CFS. Most have not been officially diagnosed. Only a small percentage of ME/CFS patients reach Whitney’s degree of immobility.

The Dream Team

Davis is now Director of the lab at the Stanford Genome Technology Center. The lab is credited with a good portion of technology that is related to the Human Genome Project. Davis envisions this new project as finding the molecular basis affecting Whitney and others around the globe, numbering into the millions.

Relying on his connections from past projects, Davis has been calling high-level researchers. His calls have been well received. He is building a world-class team.

The team has already made its mark with several inventions. Their “nanoneedle” is notably an initial success. Working with the nanoneedle, they found that the blood of patients with ME/CFS responds to “stress” (in this case salt) in a different way than that of healthy people. Their goal is to develop an inexpensive device that will identify ME/CFS accurately.

With a blood test in place that identifies the molecular abnormality found in ME/CFS patients, pharmaceutical companies would be encouraged to take on the challenge of developing therapies for the disease.

Until now, funding for this research has been scarce. There has been no known cause or even a diagnostic lab test. There is no FDA-approved treatment for the disease. In the early 1980’s it was dismissed as “yuppie flu.”

The non-profit advisory board that Davis set up is called the Open Medicine Foundation. It has raised $18 million to research ME/CFS. But the type of progress Davis and his team envision requires an even greater amount.

A Wide Range of Symptoms

Symptoms of ME/CFS vary widely. Some patients are able to continue working in an office. Others are confined to bed most of the day. The severity of the symptoms changes each day or even within a day.

Other symptoms may include headaches, sore throat, dizziness, or irregular heartbeat. Exercise can cause extreme fatigue. With so much in common with other less severe diseases, it has been difficult to diagnose the disorder.

Reaching Out to Others

ME/CFS patients throughout the world have written to Dafoe and Davis telling them how their devotion to their son is such an inspiration. Most are shocked at the severity of Whitney’s condition. Dafoe said that many of patients who write admit to being suicidal. But just as many say that if Whitney can fight to survive, they can too. Dafoe feels that her son is saving lives by his mere existence.

For now, the daily ritual remains the same, and Davis will not give up hope that his team will be successful.

For a while, Whitney was able to text with his parents. His last text to his parents read: “I’m sorry I’m ruining your golden years.”


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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