Understanding Chronic Fatigue

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You're always exhausted and sometimes need to spend days in bed. You feel achy, constantly have a headache, and can't concentrate. Your doctor has tested you for mono, thyroid problems and a slew of other health conditions, but nothing seems to be wrong. So are you just depressed? A complainer? Or are you physically ill?

This quandary is all too familiar to someone suffering from chronic fatigue syndrome. Friends, family members and even doctors may tell you the symptoms are all in your head. Fortunately, there is a growing awareness that this condition is real and sometimes very severe. 

What Is Chronic Fatigue Syndrome (CFS)? 

People with CFS have persistent, debilitating fatigue that lasts for at least six months. In order to make a diagnosis, a doctor must first rule out other conditions (such as hypothyroidism and mono) that can cause similar symptoms. She also needs to confirm that a patient meets four or more of the eight additional criteria: prolonged exhaustion after physical or mental exertion, unrefreshing sleep (you don't feel rested, even after spending plenty of time asleep), memory/concentration problems, muscle pain, joint pain, headaches, sore throat and tender/sore lymph nodes. 

Many CFS patients also suffer from depression, but any depression is secondary—the result of dealing with a chronic illness, says Derek Enlander, MD, an internist who specializes in the treatment of CFS. "Some doctors still think of CFS as a psychiatric condition, but this is a physical disease. Cancer patients are often depressed, but no one would suggest that depression causes cancer."

What Causes It?

No one really knows what causes CFS, which is part of the reason that it is often not taken seriously. Some experts have suggested that it's an immune system disorder; others believe that a hormone imbalance is primarily to blame. Now there's evidence that it may be caused by a virus: Recent research, published in the journal Science, found that a group of CFS patients were infected with a retrovirus called XMRV. Unlike a regular virus, such as influenza, "a retrovirus inserts itself into your genome and stays there forever," explains senior study author Judy Mikovits, PhD, director of research at the Whittemore Peterson Institute for Neuro-Immune Disease. She says there are only three known retroviruses: HIV, HTLV (which causes leukemia and various neurological conditions) and XMRV, which has also been linked to prostate cancer (in addition to CFS).

It's too early to say whether XMRV actually causes CFS, but this research is exciting for many patients and medical experts who say they finally have evidence that CFS is a real, infectious disease. CFS patients who want to be tested for XMRV can do so by having blood samples sent to the VIP DX lab in Nevada. However, Dr. Mikovits says you may not want to bother, since the test can't be used to diagnose CFS and there's no treatment for XMRV right now.

How Is It Treated? 

Ask five doctors how to treat CFS and you may get five different answers. There's no known cure, and different remedies may help some patients and not others. David Borenstein, MD, a physical medicine and rehabilitation doctor who treats many CFS patients, says he usually starts by teaching patients about sleep hygiene— lifestyle habits that promote better sleep—and that he often prescribes sleep medication as well. He also recommends a variety of supplements—including coenzyme Q10, L-carnitine, B vitamins and bovine adrenal extract—to increase energy levels. Some patients need intravenous vitamins, hormone therapy or a prescription antiviral medication that must be ordered from Canada. "You really need a multifaceted approach," says Dr. Borenstein.

Other doctors, such as Dr. Enlander, treat patients with weekly injections of hepapressin, a drug that regulates the immune system. He also recommends special immune-boosting capsules calledImmunoProp.

Meanwhile, Dr. Mikovits is hopeful that the discovery linking the XMRV retrovirus to CFS might eventually lead to a cure—though first the study results need to be repeated and independently verified. The next step will be clinical trials to test potential treatments for this retrovirus. She says trials could start as early as next year; people interested in participating can learn more atWPInstitute.org.