CFS: New Insights, New Hope by Kim McCleary, President & CEO of the CFIDS Association of America
It started like a bad case of the flu. But two months later, when the symptoms felt as fierce as that first day, Annemarie began to question her doctor’s “it will run its course and you’ll feel better soon” approach to her care. Although the lab tests he ran weeks later came back mostly within “normal” range, Annemarie still felt like she was living in someone else’s badly functioning body.
Her muscles and joints ached. Her throat was raw and sore and throbbing headaches came on without warning. She felt foggy-headed all the time, and had trouble remembering simple thoughts or following reruns of familiar TV sitcoms. Even though she was bone-tired all the time, she had trouble falling asleep and staying asleep. And there was no stamina for everyday tasks, let alone the activities she enjoyed doing with family and friends. At 41, she couldn’t keep up with her 68-year-old mother. She felt like she was going crazy.
It was months before Annemarie was finally diagnosed with chronic fatigue syndrome (CFS). The condition affects at least a million American adults and teens and has a life-altering impact on those who have it. It can last for years and total recovery is rare. Women are affected four times as often as men. In kids, it’s more common after puberty than in younger years. Both facts suggest neuroendocrine involvement and recent research has uncovered other evidence of body systems gone awry.
Experts generally agree that CFS is likely to be the result of multiple factors, and its cause and effective treatment have so far eluded even the most committed researchers and clinicians. Study of the condition began in the 1980s and it was initially linked to the Epstein-Barr Virus (EBV) that causes mononucleosis. This theory didn’t pan out, but more recent studies show that viruses and other agents (including human herpesvirus-6, EBV, enteroviruses, Ross River virus and Q fever) are possible triggers for the cascade of symptoms that define CFS (see inset #1). Newer technologies have shown genes play a role, possibly pointing to a genetic predisposition, and other research has documented disruptions in the immune systems, stress-response systems and brains of CFS patients.
One of the biggest problems CFS patients face is getting diagnosed. Like Annemarie, the experience of having CFS is marked by an inability to keep up with life as you once knew it. The individual symptoms are unremarkable and, as a collection, can sound like the diary of a hypochondriac. Fewer than 20% of people with the illness get diagnosed by a clinician, another barrier to even the most basic treatment. But health care professionals who take time to sort through the patient’s report can make the diagnosis fairly easily, after ruling out other possible explanations for the symptoms (see inset 2). Treatment then addresses the most troubling symptoms and is aimed at achieving improved quality of life, rather than complete cure.
Dr. Lucinda Bateman, a nationally recognized CFS expert, finds that treating sleep problems can often help improve other symptoms like pain and poor concentration. She finds a tailored combination of medications, lifestyle adjustments and coping strategies can make a positive difference. “Because CFS affects nearly every dimension of the patient’s life, I believe patients benefit from a team approach to managing the physical, social and psychological effects of the illness.” Even so, it can be very challenging for the patient, and the health care provider, because an individual approach is needed and it often takes several tries to find combinations that lead to modest improvement.
CFS has come a long way since it was first tagged with the derisive label “yuppie flu” in the 80s. Although the name chronic fatigue syndrome doesn’t begin to reflect the severity and complexity of the condition, it’s being taken more seriously now than in the past. Says Dr. Bateman, “In addition to taking care of my patients, my mission is to change the way these diseases are treated. I think my job is to bring the information that’s sound and scientific to the attention of academic institutions and health care providers so they will become more interested in and involved with these diseases.” The U.S. Centers for Disease Control and Prevention agrees, and is sponsoring a national awareness campaign targeting the public and health care professionals. The CFIDS Association of America has been on the front lines of education and advocacy for 20 years, and has monitored progress in these areas. More physicians are becoming familiar with the diagnosis and management of CFS and the general public better understands what CFS is and its impact on the daily life of those who have it.
For Annemarie and the million more like her, increased awareness and expanded research into better diagnostics and treatment offer hope for a healthier future.
Kim McCleary is president & CEO of the CFIDS Association of America, the nation’s largest organization working to conquer CFS. More information about CFS is available at www.cfids.org and www.cdc.gov/cfs.
CFS is marked by fatigue that’s not due to ongoing exertion, isn’t relieved by rest, is of new onset (not lifelong) and results in a significant reduction in previous levels of activity.
Four or more of the following symptoms are present for six months or more:
– impaired memory or concentration
– post-exertional malaise (extreme, prolonged exhaustion following physical or mental activity)
– unrefreshing sleep
– muscle pain
– multijoint pain
– headaches of a new type
– sore throat
– tender lymph nodes
Standard lab tests and a thorough medical history are needed to rule other possible causes.
These treatable conditions can mimic CFS. Ask your health care professional for a thorough evaluation to look for these other possible causes of your symptoms.
If you experience…
… unrefreshing sleep, snoring, frequent short awakenings, ask about sleep apnea
… low energy, hair loss, leaden feeling limbs, ask about hypothyroidism
… flu-like symptoms, fever, body aches, ask about infections like Lyme and EBV
… light-headedness, fainting and weakness, ask about conditions of dysautonomia
… loss of interest in activities, early morning awakening, ask about clinical depression
Medication side effects, allergies, and diet and nutritional deficiencies can also cause symptoms similar to CFS.