CFS presents diagnostic, treatment challenges
NADH may offer relief
It’s known as a "trash bag" — a disease at the bottom of the diagnostic barrel, a diagnosis made only after everything else has been ruled out.
Chronic fatigue syndrome (CFS) is a disease that defies a specific definition and one some believe does not exist. Its cause is unknown. There is no definitive diagnostic test and no substantive treatment.
Yet an estimated 500,000 people have been diagnosed with chronic fatigue syndrome, and millions more believe they have the disease nebulously defined by the Centers for Disease Control and Prevention (CDC) in Atlanta as "characterized by profound tiredness or fatigue . . . lasting six months or longer."
Sometimes it’s a lot longer.
Boyce Tollison, MD, a family physician in Easley, SC, has a patient who has been sick for several years.
"I put her through all the work-ups — rheumatoid and psychological — and she essentially became disabled. Now she’s incapacitated," he says.
"The only way to diagnose CFS is to rule out all the common causes of fatigue."
Although he’s experienced the frustration of trying to help a patient whose condition defies help, he thinks "chronic fatigue exists as an entity; it’s not as prevalent as people try to imply it is," he says.
Some doubt the existence of CFS
There is a wide variety of opinions on diagnosis, treatment, and even the existence of the disease for which the federal government grants disability benefits and for which diagnostic guidelines have been issued by the CDC.
Fatigue often manifests as depression, and depression manifests as fatigue, creating a Catch-22, says Meir Kryger, MD, professor of medicine and director of the Sleep Disorders Center at the University of Manitoba (Canada) at Winnipeg.
Kryger says he is doubtful chronic fatigue syndrome exists at all, and suggests "many patients are married to their diagnosis and perhaps to the disability payment they can get from it."
Joseph Bellanti, MD, director of the International Center for Interdisciplinary Studies of Immunology at Georgetown University Medical Center in Washington, DC, is sure CFS exists.
"I am convinced it’s not a psychiatric entity, although a lot of patients with CFS are depressed," he says. "It’s a chicken and egg thing."
One major managed care company handles CFS like any other condition.
"We understand chronic fatigue syndrome is a diagnosis made by eliminating other possible diagnoses. We cover tests and treatment as ordered by the primary care physician," says Betsy Sell, spokeswoman for Aetna U.S. Healthcare in Blue Bell, PA.
Treating CFS is as challenging as making a diagnosis. According to the CDC, medications that have been shown to be useful for relief of CFS symptoms include NSAIDS, benzodiazepines, tricyclic antidepressants, serotonin re-uptake inhibitors, non-sedating antihistamines, and antihistamines.
One of the most promising therapies came from Bellanti’s study of a nutritional supplement, NADH (nicotinamide adenine dinucleotide), a naturally occurring coenzyme, produced "encouraging" results.
The study, published in the February 1999 issue of the Annals of Allergy, Asthma, and Immunology, shows improvement for nearly one-third of the participants.
The substance, marketed in the United States under Enada, has been used in Europe for 10 years as an intravenous treatment for Parkinson’s disease by George Birkmayer of the Birkmayer Institute in Vienna, Austria, where L-dopa was first used to treat Parkinson’s, according to Matt Fitzsimmons, MBA, president of Menuco Corp. in New York City, which found a way to stabilize NADH and market it as a nutritional supplement.
Few suffer side effects from NADH
Bellanti says his double-blind placebo-controlled crossover study of 26 patients diagnosed with CFS under the CDC’s criteria proves Enada is one of the few nutritional supplements to be tested under the FDA’s review process for new drugs.
"We didn’t have to do it that way," Fitzsim-mons says, "But we wanted to follow the FDA’s drug approval methods to use the tried and true methods and the highest level of investigation to show this is safe and effective."
Bellanti’s study shows 31% of the participants reported improvement after they took 10 mg of NADH or a placebo for four weeks; four weeks with no medication, and four weeks NADH or placebo. Patients reported increased energy, alleviation of symptoms, and improvement in quality of life.
In a follow-up open label study of 80 participants, 73% showed marked improvement over time and no side effects or adverse reactions with other medications.
Bellanti concluded NADH may be a valuable adjunct therapy for the management of CFS and recommends further clinical trials.
Enada can be purchased over the counter at health food stores and through buyer’s clubs.
NADH occurs in all living cells and plays a key role in the body’s energy-producing mechanisms. It occurs naturally in muscle tissue of fish, poultry, and cattle.
Researchers have been unsatisfied with other recent studies on drug therapy.
One study looked at the possible use of low-dosage hydrocortisone, but rejected the "meager improvement in subjective wellness" on the premise the benefits were outweighed by adverse effects, including adrenal suppression by including the use of low doses of hydrocortisone.
Non-pharmacological therapies that have been used with varying degrees of success include:
• behavioral therapy;
• physical therapy and exercise routines
• acupuncture and acupressure;
• stress reduction and relaxation techniques;
• massage therapy.
While the cause of CFS is unknown, there are theoretical connections with other viruses known to cause severe fatigue. CFS has also been known as chronic Epstein-Barr virus disease, chronic fatigue immune dysfunction syndrome, epidemic neuromyasthenia and myalgic encephalomyelitis.
The majority of patients diagnosed with CFS are Caucasian women between the ages of 25 and 45.
For more information, Meir Kryger of the University of Manitoba can be reached at (204) 235-0021; Joseph Bellanti of Georgetown University Medical Center at (202) 687-5100; and Matt Fitzsimmons of Menuco at (212) 320-2266.
About Chronic Fatigue Syndrome (CFS)
Clinically evaluated, unexplained, persistent or relapsing chronic fatigue lasting more than 6 months, and one or more of the following:
• substantial impairment in short-term memory or concentration;
• sore throat;
• tender lymph nodes;
• muscle pain;
• multijoint pain without swelling or redness;
• headaches of a new type, pattern, or severity;
• unrefreshing sleep;
• post-exertional malaise lasting more than 24 hours.
Conditions that exclude a diagnosis of CFS
Medical conditions which may explain the presence of chronic fatigue:
• untreated hypothyroidism, sleep apnea, narcolepsy, and iatrogenic conditions such as side effects of medication;
• some types of malignancies, chronic hepatitis B or C infection;
• past or current diagnosis of a major depressive disorder, bipolar affective disorders, schizophrenia, delusional disorders, dementia, anorexia nervosa, or bulemia nervosa.
Conditions that do not exclude diagnosis of CFS
Any conditions defined primarily by symptoms unconfirmable by diagnostic laboratory tests:
• fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or melancholic depression, neurasthenia, and multiple chemical sensitivity disorder;
• conditions under treatment sufficient to alleviate symptoms, including hypothyroidism and asthma;
• treated Lyme disease or syphilis.
Source: Centers for Disease Control and Prevention, Atlanta.
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