From The White House Chronicle, 13 May 2012 (story by Llewellyn King).
It is time to add May 12th to our list of dates worth commemorating — especially for 1 million in the United States who suffer from Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis.
This year marks 192 years since Florence Nightingale’s birth in Florence, Italy to wealthy English parents. As a young woman, she felt herself called to take up nursing. Later, her heroic work caring for wounded British soldiers during dark nights of the Crimean War earned her worldwide fame as “The Lady of the Lamp.”
Nightingale is given credit for inventing secular and modern nursing because she recognized that troops were dying, not just from their untreated wounds, but also from malnutrition and dehydration.
She followed up her war work by writing a landmark text for nurses and founding a training school in London. Her natural talent for numbers helped her keep detailed data on patients, and she ultimately won extra renown as a statistician.
But from 1857 Nightingale found herself often disabled by poor health, which some suggest may well have been Chronic Fatigue Syndrome(CFS). As a result, Nightingale now has been adopted as a kind of patron saint by for this under-studied disease. CFS sufferers here and abroad (17 million) commemorate her birthday as a kind of rallying point; their own lamp in the dark.
And the world of CFS is dark indeed — an abysmal place of unmediated pain, disability, hopelessness, financial ruin and sometimes suicide. One doctor told me that if she were to have to choose for herself between CFS and cancer, she would choose cancer. “At least for cancer, there are treatments; if they fail, you die. With CFS you are the living dead,” she said.
Everything about CFS is controversial. It has been on the medical agenda since 1934, when there was an outbreak centered on a Los Angeles hospital. Currently 63 outbreaks have been documented, but still what is not known dwarfs what is known.
What is known is that it is a disease of the immune system, related to and in some cases overlapping fibromyalgia, a disease of the muscles. It also involves the neurologic and endocrine systems. The disease has broken out in startling clusters – locations in Nevada, Florida, New York and California among others just in the 1980s.
Its deadliness is slow and subtle. Studies suggest that it takes 20-25 years off the average sufferer’s life, but there are no dramatic sudden deaths or gory symptoms to attract attention.
Expert virologists such as Columbia University’s Dr. Ian Lipkin agree that the disease may yet turn out to be viral. But the once-exciting report from the Whittemore Peterson Institute in Reno, Nev., targeting the XMRV retrovirus had to be retracted for faulty science.
Doctors are slow to diagnose CFS because if that is not the area of their practice, there is no easy diagnosis.
At present there are no bodily fluid tests, no imaging, no temperature transients. Nothing. Just very sick people; very, very sick people. Immune system studies, spinal fluid aberrations, and other biomarkers show promise and may be used to identify the disease some day.
Probably 75 percent of CFS victims start with some flu-like disease. Maybe 4 percent of people who come down with mononucleosis will get CFS.
Most sufferers' lives are turned upside down. Their first collapse comes without warning, usually following exercise.
Although memory and verbal-skills loss are often part of CFS, most victims remember exactly the day and time they were stricken. Laura Hillenbrand, who incredibly has written two best sellers, cannot leave her home and could not attend her own wedding.
Deborah Waroff, a New York writer has had CFS for 23 years. In September 2003 and all through 2004, she could do little more than lie on the living room couch. Waroff struggled back to the point of functioning a few hours a day. But two back surgeries in 2010 left her immune system at a record low level, and brought on another long-term collapse. She is back to two or three-hour spells of activity, but not on two consecutive days. “I've lost half of my adult life,” she says.
These stories are multiplied a million times. Being a victim can include abandonment by families, spouses and lovers, friends and colleagues, workplaces and insurance companies.
Florence Nightingale shone a light of hope from her lamp in the ghastly Crimean hospital wards. CFS sufferers hope that the spirit of Nightingale will shine a loving light into the darkness of their disease — lost as they are in plain sight of the world around them. – For the Hearst-New York Times Syndicate