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Optimism grows for treatment of fatigue disorder

Sunday 13 February 2011

IndyStar.comFrom Indianapolis newspaper


Optimism grows for treatment of fatigue disorder

By Shari Rudavsky

February 6, 2011

No one could tell Karen LeVier why she was not shaking the flu. Not only did her throat feel sore and her sinuses infected, she had such overwhelming fatigue she could not shower. The malaise continued for a year and a half, during which LeVier, a once healthy woman in her 30s, stopped working and sold her house.

No one could pin down a diagnosis, and over the next eight years, LeVier stumbled through months when she could make it through the day but not have enough energy to cook dinner.

LeVier, who used to love to do ceramics and had a career as manufacturing automation project engineer, did not understand what had happened.

"It was like suddenly I just hit a wall," she said. "The fatigue was something I had never experienced before; it was just overwhelming."

In 2006, LeVier, now 50, developed orthostatic intolerance, meaning her heartbeat would increase and blood pressure drop when she stood, making her dizzy. Doctors finally diagnosed her with chronic fatigue syndrome.

As her story shows, there's no clear test for the syndrome, which is most common in women between ages 20 and 40 and which affects about 1 million people in the United States.

That could change. Research in the past year and a half suggests there could be a link between chronic fatigue syndrome and XMRV, a retrovirus also associated with prostate cancer. This has renewed hope of developing a diagnostic test as well as treatment.

In December, a patient advocacy group -- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Worldwide Patient Alliance -- took out an advertisement in The Washington Post, highlighting the discovery and calling for additional research. While only 7 percent of healthy blood donors were found to carry the virus, 87 percent of people with chronic fatigue syndrome had it.

The potential link led the American Red Cross to indefinitely defer blood donations from those diagnosed with chronic fatigue syndrome.

This spring, the National Institutes of Health will host a conference focusing on XMRV.

"All of this increased attention is good news for patients," said Kimberly McCleary, president and CEO of Chronic Fatigue and Immune Dysfunction Syndrome Association of America. "This increased focus on a retroviral agent has deepened understanding of the severity of the illness."

XMRV is not the first virus named as a potential culprit.

Dr. Dennis Ang, an assistant professor of medicine and rheumatologist at the Indiana University School of Medicine, said he will reserve judgment until more studies are done.

"We have been going back and forth with different viruses, but the bulk of the data shows that viruses are not the major culprit," he said.

More optimistic is Dr. David Bell, a family medicine doctor who has been studying chronic fatigue syndrome since his small town of Lyndonville, N.Y., experienced an outbreak more than 25 years ago.

If XMRV turns out to be the cause, it could open the door for anti-retroviral therapy, similar to HIV drugs.

"There are always treatments on the horizon, but they have kind of turned into dead ends, so the XMRV is really the most important step," said Bell, who chaired a Health and Human Services advisory committee on the condition. "If in fact that's true, we'll have this illness licked."

Solving that mystery could also silence whispers that chronic fatigue syndrome is at least partly in the minds of those who suffer from it.

The lack of a definitive cause and the fact that many who suffer from chronic fatigue syndrome look completely healthy have led some to trivialize it. Even the name contributes, referring to a symptom, fatigue, that many perfectly healthy people say they experience.

"Calling this chronic fatigue syndrome is like calling diabetes chronic thirst syndrome," said Tina Tidmore, spokeswoman for the disorder's alliance.

Flu-like symptoms, swollen lymph nodes, sore throat, sleep disturbances and pain are other symptoms. Often, the syndrome is diagnosed along with fibromyalgia or is confused with it.

Deciding between the two diagnoses may come down to whether the chief complaint is pain or fatigue, Ang said. While there are drugs to treat fibromyalgia, there is no medication specifically for chronic fatigue. Instead, doctors tend to treat the symptoms.

Dr. John Hague, an Indianapolis rheumatologist, searches hard for other explanations for his patients' fatigue, such as sleep apnea, a condition in which he can intervene.

"If they meet the criteria for chronic fatigue syndrome, it's a bit of a challenge," said Hague, chair of the department of rheumatology at St. Vincent Health. "It doesn't fix things. It gives them a label, but it doesn't give them a treatment."

Westfield resident Tom Jarrett, 33, learned that three years ago when he developed chronic fatigue syndrome. The certified financial planner found himself sleeping 16 to 18 hours a day.

Now he dreams of the day that he can play football or wrestle with his two sons, ages 4 and 6.

"I never realized that fatigue could be so disabling," he said. "That's why I'm hoping they do find a way to test for it and that this leads to some kind of answer."

Additional Facts

Chronic Fatigue Syndrome

» Also called: Myalgic Encephalomyelitis.

» Number affected: 1 million in the United States; 17 million worldwide.

» Common symptoms: Extreme tiredness and or weakness; feeling very tired for more than 24 hours after physical or mental exercise; forgetting things or having a hard time focusing; feeling tired even after sleeping; muscle pain or aches; pain or aches in joints without swelling or redness; headaches of a new type, pattern or strength; tender lymph nodes in the neck or under the arm; sore throat.

» Cause: Unknown.

» Who gets it: Women are four times as likely as men to get this. Only about 20 percent of those who have chronic fatigue syndrome have been diagnosed with it. It can occur at any age, but the average age that it first occurs is 38.


The above originally appeared here.



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