Problems with concentration and memory. Unrefreshing sleep and debilitating fatigue. Muscle and joint pain. Headaches. Recurrent sore throat. Tender cervical or axillary [cq] lymph nodes. What's the diagnosis? According to K. Kimberly McCleary, not enough physicians consider chronic fatigue syndrome as the culprit.

 

McCleary is president and chief executive officer of the CFIDS Association of America. CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome, and one of the organization's primary initiatives is to help physicians piece together chronic fatigue's myriad potential symptoms and craft a treatment strategy.

 

"I think there is still a lack of appreciation for the severity of the illness and the impact it has on the individual. Part of that is due to the name chronic fatigue syndrome. Today, we're all tired with our busy 24/7 lives," McCleary said. Yet now medical research has chronicled chronic fatigue syndrome's devastating effects on its sufferers and is honing in on physiological triggers for the symptoms. Finally, CFS is out of the shadows and sufferers aren't dismissed as hypochondriacs or patients who can't deal with the downsides of aging. While people of all ages can get CFS, the illness occurs most often in those aged 40 to 59. The federal Centers for Disease Control and Prevention estimate that more than 1 million Americans have CFS, yet fewer than 20 percent have been diagnosed.

 

"The problem with chronic fatigue syndrome is that while we can sometimes measure things that aren't quite right with the patient, it's hard to look at that patient in the office and say, 'There's something wrong with you,' " said Satish Raj, MD, an assistant professor of medicine and pharmacology with the Vanderbilt Center for Autonomic Dysfunction. He said the study of CFS is made more complicated "because there probably isn't one thing. There are different subpopulations and different ways of arriving at a similar clinical presentation."

 

Autonomic nervous system researchers at Vanderbilt "actually backed into the chronic fatigue world," Raj said, when they noticed that their patients suffering from postural tachycardia syndrome [cq] suffer some symptoms in common with CFS. "They go grocery shopping, and then they're bedridden for two days," Raj said. Of the two illnesses, he added, "It's not that one is a subset of the other, but there's an overlap group." Thus, Vanderbilt nabbed National Institutes of Health funding to study the connection. The research team includes Raj, principal investigator Italo Biaggioni, MD, [cq] and clinical specialist Bonnie K. Black.

Raj said an intriguing aspect of CFS research is that scientists studying the illness are "a very eclectic group" that includes infectious disease investigators, autoimmune experts, genomists, proteomics specialists and others. At the most recent gathering of CFS physicians and researchers in March, about 200 people from 35 countries converged, representing a host of specialties.

According to McCleary, "There's a growing convergence on the types of studies that are going to be the most helpful. There is definitely a resurgence with some of the newer technologies of the role that infectious agents play."

Frustrating both physicians and patients is that no diagnostic marker has yet been found that would definitively identify the disease. That's one reason the CFIDS Association has compiled what it calls a physician's "toolkit," an easy-to-use resource for clinical care. It includes information about the disease, research updates, best practices related to diagnosing and managing CFS, and a reliable diagnostic algorithm to help physicians help their patients.

 

McCleary noted that one of the most confounding issues with CFS diagnosis is that the disease has symptoms that mimic those of so many other maladies, including multiple sclerosis, early-onset Parkinson's, lupus, hypothyroidism, Lyme disease and fibromyalgia. All those conditions and others must be considered – and ruled out. The algorithm recommends a battery of laboratory screenings: urinalysis, total protein, glucose, C-reactive protein, phosphorus, electrolytes, complete blood count with leukocyte differential, alkaline phosphatase, creatinine, blood urea nitrogen, albumin, ANA and rheumatoid factor, globulin, calcium, alanine aminotransferase or aspartate transaminase serum level and thyroid function, both TSH and free T4. [cq!] To help nail down symptoms, physicians may also use several questionnaires, such as the Multidimensional Fatigue Inventory, the McGill Pain Score and the Sleep Answer Questionnaire.

 

"There are about 5,000 articles in the medical literature, spread out over all kinds of disciplines and journals, so it's hard for the clinicians to keep up with the evolving hypotheses. So our materials are really geared for the clinician who has that just-in-time patient need," McCleary explained.

 

The CFIDS Association also offers two CME courses, one via Medscape and one through CDC. McCleary said healthcare providers who participated in the Medscape course responded in a survey that they were 46 percent more likely to make evidence-based choices regarding CFS as a result of the continuing education. They also cited the lack of a diagnostic marker as the most important barrier to recognition and treatment of the disease.

 

"There's always in our society a quest for sort of the magic bullet, and right now we don't have that in terms of a treatment," McCleary said. "But there is a better quality of life and a better opportunity for function and being involved in everyday activities for CFS patients with careful attention to management and lifestyle issues and supportive medications."