For over 30 years, our family has struggled with our son Paul’s strange illness. His wife Juli has it worse. They lived isolated from friends, church, work, and even family. Misnamed Chronic Fatigue Syndrome (CFS), this illness has become the butt of jokes: who isn’t “fatigued”?
The Face of CFS
Delivering a TED Talk on her CFS, Jennifer Brea, however, has given a face to the illness. She has also mobilized CFS patients in a world-wide agitation for attention from the medical community. Because CFS immobilizes a person to near-paralysis, patients withdraw from life, unable to publicly agitate for change. But no more. Her full-length documentary video (Unrest, sold by YouTube) will come out in DVD in December. In it, she documents her life as a result of the illness, and how she organizes others world-wide through Skype to agitate for recognition and for change.
It’s All In My Head?
Dr. Ron Davis, Stanford professor of Biochemistry and Genetics, and Director of the Stanford Genome Technology Center has taken up the cause to find a medical treatment for CFS. The biggest challenge has been that blood testing, even by medical specialists, yields no observable anomalies. As a result, experts usually tell patients, “there is nothing wrong with you,” or “I’m referring you to psychiatry for your depression.” Our children also experienced this humiliation 30 years ago.
In the illness of Whitney, his son, Ron found reason to explore the biological basis of CFS, now renamed Myalgic Encephalomyalitis (ME/CFS). His story is available on Youtube listed in the Sources below. Knowing Whitney isn’t just fatigued, depressed, or a malingerer, yet merely exists close to death, he describes the illness as “a living death.” What we now know, he says, is that ME/CFS results from a problem in the cell: the mitochondrial DNA doesn’t produce energy as it does in normal functioning. As a result, we enter a state similar to “hibernation” in some animals. Perceiving a threat, the organism, down to the cellular level, shuts down to conserve energy.
Although the Centers For Disease Control in Altanta, GA, for years has listed criteria for a diagnosis of CFS, only recently has it scheduled a training workshop for physicians in the illness. The standard medical prescription for treatment includes “light exercise.” Now, however, they recognize that remedy only exacerbates the illness.
A World-Wide Epidemic
So, in medicine and in public awareness, hope dawns for our son, his wife, Jennifer Brea and millions world-wide who experience the debilitating effects of ME/CFS. The Open Medical Foundation (OMF) now focuses on their End ME/CFS Project, designed to find biomarkers and effective treatments for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). These findings should also provide insights into related diseases, such as fibromyalgia and Lyme disease. “ME/CFS is a global crisis,” they say. “We communicate with patients in over 90 countries. We proudly share translations of our news and newsletters to inform our global OMF family and share our message of hope internationally.” If you’d like to know more, or get involved, contact the Open Medical Foundation (OMF) at www.omf.ngo.
[Sources: Jennifer Brea picture: www.Ted.com Jennifer Brea video: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_ a_disease_ doctors_can_t_diagnose Unrest (the film) https://www.youtube.com/watch?v=sGBXXlQO49g Dr. Ron Davis https://www.youtube.com/watch?v=vZQgJP47kA4 Diagram: www.omf.ngo]