Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’
By DAVID TULLER
For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness "yuppie flu" and "shirker syndrome."
But the syndrome is now finally gaining some official respect. The Centers for Disease Control and Prevention, which in 1999 acknowledged that it had diverted millions of dollars allocated by Congress for chronic fatigue syndrome research to other programs, has released studies that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes.
The agency has also sponsored a $6 million public awareness campaign about the illness.
And last year, it released survey data suggesting that the prevalence of the syndrome is far higher than previously thought, although these findings have stirred controversy among patients and scientists. Some scientists and many patients remain highly critical of the C.D.C.’s record on chronic fatigue syndrome. But nearly everyone now agrees that the syndrome is real.
"People with C.F.S. are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease," said Dr. William Reeves, the lead expert on the illness at the disease control agency, who helped expose its misuse of chronic fatigue financing.
Chronic fatigue syndrome was first identified as a distinct entity in the 1980s. (A virtually identical illness had been identified in Britain three decades earlier and called myalgic encephalomyelitis.) The illness, which afflicts more women than men, causes overwhelming fatigue, sleep disorders and other severe symptoms. No consistent biomarkers have been identified and no treatments have been approved for addressing the underlying causes, although some medications provide symptomatic relief.
Patients say the word "fatigue" does not begin to describe their condition. Donna Flowers of Los Gatos, Calif., a physical therapist and former professional figure skater, said the profound exhaustion was unlike anything she had ever experienced. "I slept for 12 to 14 hours a day but still felt sleep-deprived," said Ms. Flowers, 51, who fell ill several years ago after a bout of mononucleosis. "I had what we call ‘brain fog.’ I couldn’t think straight, and I could barely read. I couldn’t get the energy to go out of the door. I thought I was doomed. I wanted to die."
Studies have shown that people with the syndrome experience abnormalities in the central and autonomic nervous systems, the immune system, cognitive functions, the stress response pathways and other major biological functions.
Researchers believe the illness will ultimately prove to have multiple causes, including genetic predisposition and exposure to microbial agents, toxins and other physical and emotional traumas. Studies have linked the onset of chronic fatigue syndrome with an acute bout of Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and other infectious diseases.
"It’s unlikely that this big cluster of people who fit the symptoms all have the same triggers," said Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, the advocacy group in charge of the C.D.C.-sponsored awareness campaign. "You’re looking not just at apples and oranges but pineapples, hot dogs and skateboards, too."
Under the most widely used case definition, a diagnosis of chronic fatigue syndrome requires six months of unexplained fatigue as well as four of eight other persistent symptoms: impaired memory and concentration, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed sleeping patterns and feelings of malaise after exertion.
The broadness of the definition has led to varying estimates of the syndrome’s prevalence. Based on previous surveys, the C.D.C. has estimated that more than a million Americans have the illness. Last month, however, the agency reported that a randomized telephone survey in Georgia, using a less restrictive methodology to identify cases, found that about one in 40 adults ages 18 to 59 met the diagnostic criteria -- an estimate 6 to 10 times higher than previously reported rates. Many patients and researchers fear that the expanded prevalence rate could complicate the search for consistent findings across patient cohorts. These critics say the new figures are greatly inflated and include many people who are likely to be suffering not from chronic fatigue syndrome but from psychiatric illnesses.
"There are many, many conditions that are psychological in nature that share symptoms with this illness but do not share much of the underlying biology," said John Herd, 55, a former medical illustrator and a C.F.S. patient for two decades.
Researchers and patient advocates have faulted other aspects of the C.D.C.’s research. Dr. Jonathan Kerr, a microbiologist and chronic fatigue expert at St. George’s University of London, said the agency’s gene expression findings last year were "rather meaningless" because they were not confirmed through more advanced laboratory techniques.
Kristin Loomis, executive director of the HHV-6 Foundation, a research advocacy group for a form of herpes virus that has been linked to C.F.S., said studying subsets of patients with similar profiles was more likely to generate useful findings than Dr. Reeves’s population-based approach. Dr. Reeves responded that understanding of the disease and of some newer research technologies is still in its infancy, so methodological disagreements were to be expected. He defended the population-based approach as necessary for obtaining a broad picture and replicable results. "To me, this is the usual scientific dialogue," he said.
Dr. Jose G. Montoya, a Stanford infectious disease specialist pursuing the kind of research favored by Ms. Loomis, caused a buzz last December when he reported remarkable improvement in 9 out of 12 patients given a powerful antiviral medication, valganciclovir. Dr. Montoya has recently completed a randomized controlled trial of the drug, which is approved for other uses, but the findings have not been released. Dr. Montoya said some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood. Ms. Flowers, the former figure skater, had high levels of antibodies to both viruses and was one of Dr. Montoya’s initial C.F.S. patients. Six months after starting treatment, Ms. Flowers said, she was able to go snowboarding and take yoga and ballet classes. "Now I pace myself, but I’m probably 75 percent of normal," she said.
Many patients point to another problem with chronic fatigue syndrome: the name itself, which they say trivializes their condition and has discouraged researchers, drug companies and government agencies from taking it seriously. Many patients prefer the older British term, myalgic encephalomyelitis, which means "muscle pain with inflammation of the brain and spinal cord," or a more generic term, myalgic encephalopathy.
"You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name," said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.
Updated from an article that originally appeared in The New York Times on July 17, 2007.
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If the only two medications proven to work on CFS are Ampligen and Valganciclovir -- both anti-virals -- and anti-depressants are proven useless against post-viral CFS, then it should be obvious that CFS has a viral origin and is not a psychiatric problem.
It should be recalled that when the AIDS epidemic started, there was no blood test for that virus, either. So just because all tests are normal does not mean that the patient doesn't have a virus ... it only means that the patient doesn't have one of the viruses tested for. My tests for specific viruses don't reveal anything to be concerned about, but when I was given a non-specific test for signs of infection/inflammation, the results were "off the charts". Clearly, there's something very wrong, even if no one has yet identified the exact virus causing my problems.
CFS costs this country about $25B per year in lost productivity. A mere 1% of that annual loss, if poured into medical research that would get us back to work, would amount to exponentially more than the total spent on CFS research by CDC in the quarter-century since the first cases were identified. Yet, that amount would be repaid in taxes in a matter of weeks if all the patients and their caregivers could get back to full productivity.
This patient alone, over my lifetime, will cost the economy over $1M in lost earnings. Many years, that's been around 15% of the total CDC research budget for CFS. Yes, you read that right -- getting 7 people like me back to our old jobs would produce more than the amount CDC spends to get us back to work. If you accept CDC's prevalence numbers of 4M patients, they're spending just over $1 per patient per year on research! Shameful.
"The incidence of CFIDS is now higher than that of lung cancer, breast cancer or HIV infection in women." How much per patient is spent on researching those diseases? What will it take for CFS to achieve parity with them?
At the very least, they need to make as much effort to publicize in the media (not with feel-good photo displays that are seen by only a few people) that CFS is real, as they have previously invested in portraying it as "depression", "psychosomatic" and other disparaging remarks. Go on TV with CNN's Dr. Gupta, with NBC's Dr. Snyderman, with Oprah, with Dr. Phil, and recant the previous claims, stating flat out that CFS has been proven to have biological underpinnings, and spelling out that it is not depression, because it has these signs and symptoms that are not seen in primary depression. (It is possible to have depression which is caused by the CFS, just as cancer patients can become depressed over their health problems, but depression doesn't cause the initial disease process, it results from the disease robbing the patient of their former lifestyle.)
Every media outlet which previously broadcast or published derisive stories claiming CFS is all in our heads should be required to devote as much air time or page space to stories enlightening their listeners/readers to the false statements made previously, and what the proven facts are about CFS.