Two new studies released this week have thwarted hopes that a cure for chronic fatigue syndrome may be imminent.
After a 2009 study linked chronic fatigue syndrome, or CFS, to a virus called XMRV, some sufferers hoped the link would lead to a cure. But two studies published this week in Science refute the initial link, claiming it was the result of laboratory mistakes. The authors of 2009 study stand behind their research.
“Like falling down a rabbit hole”
The Centers for Disease Control and Prevention estimates that at least one million people in the U.S. have CFS, but that the number could be as high as four million. People with CFS usually have their onset around puberty or in adulthood. The illness is harder to diagnosis in younger kids.
CFS is applied to people experiencing at least six months of severe fatigue, impaired memory and other symptoms like dizziness. Because there is no test to diagnose it and no specific treatment, it’s classified as a syndrome, and not technically a disease.
“It’s a diagnosis of exclusion,” said Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America. “Doctors say it’s kind of like Beethoven’s first symphony, you know it when you hear [it].”
McCleary says that people with CFS describe their first experience very similarly. They became dizzy and the room began to spin. Pain shot through their limbs and they had to sit down. “The rug is pulled out from them health wise,” she said.
This dramatic description by patients is where a lot of the viral research around CFS, such as the studies released this week, comes from. Similar to what often happens when people get viruses like malaria or the flu, people with chronic fatigue know exactly when they started to feel sick. But unlike malaria or the flu, there is no specific treatment and no end in sight.
One of the defining symptoms of CFS is post-exertional relapse, where even a very modest amount of physical and emotional activity can lead to a relapse of a person’s onset of symptoms and makes the illness worse. This can be triggered by a trip to the bank, picking up the kids at school or paying bills. People with chronic fatigue also experience dysfunctional immune systems.
“It’s like falling down a rabbit hole,” said McCleary. “With CFS, there is a swift decline without any resolution.”
New studies and treatments offer hope
McCleary and her organization are waiting for more research to take their position. The National Institutes of Health is funding two larger studies that will give more definitive answers on whether there may be a links between a virus, geographical distribution and CFS. One of the studies will look at blood samples from select labs across the country. Results are expected to come out later this year.
Most of the people who study CFS also agree that there is likely a genetic link. “Chronic fatigue seems to run in families, especially [between] mother and daughter,” said McCleary.
As far as known treatments for CFS, individualized therapy seems to be the best approach at this point. Drugs like blood pressure medications work well for some people with CFS who have a hard time regulating blood pressure control. Dietary issues also contribute to managing CFS because most of a person’s blood is involved in digestion.
According to McCleary, some doctors are using a holistic approach in addition to medication. Simple remedies include correcting posture to promote blood flow or elevating a foot in bed to restore balance.
“Chronic illness is not sexy,” said McCleary. “No matter how [these studies on] CFS turn out, it has brought a level of visibility [to the illness].” The media focus around these two new studies should be a wake-up call to physicians, advocates and researchers to continue to solve what McCleary calls the CFS “Rubik’s Cube.”