Chronic Fatigue No Longer Seen as 'Yuppie Flu'

By DAVID TULLER
Published: July 17, 2007

Correction Appended

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.”

Donna Flowers, who became ill with chronic fatigue syndrome several years ago after a bout of mononucleosis, working out in her home in Los Gatos, Calif., while taking care of her twins. Heidi Schumann for The New York Times

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 centers have also sponsored a $6 million public awareness campaign about the illness. And last month, the C.D.C. 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, or C.F.S. 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 C.D.C., who helped expose the centers’ 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 causes overwhelming fatigue, sleep disorders and other severe symptoms and afflicts more women than men. 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 post-exercise malaise.
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 disease control centers reported that a randomized telephone survey in Georgia, using a less restrictive methodology to identify cases, found that about 1 in 40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to 10 times higher than previously reported rates.
However, 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 C.D.C.’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 just begun a randomized controlled trial of the drug, which is approved for other uses.
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 chord,” 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.
Correction: July 20, 2007
An article in Science Times on Tuesday about new research and financing for chronic fatigue syndrome misstated the given name of an infectious disease specialist at Stanford University who is studying the effects of an antiviral medication in people who have the condition. He is Jose Montoya, not Joseph.

Permission for re-print granted by Co-Cure Moderator.

Learning Firsthand About Chronic Fatigue Syndrome

New York Times

Expert Q & A

Learning Firsthand About Chronic Fatigue Syndrome
By DAVID TULLER
Published: May 30, 2008

Leonard Jason is a professor of psychology at DePaul University in Chicago and the director of the university's Center for Community Research. He is on the Chronic Fatigue Syndrome Advisory Committee to the federal Department of Health and Human Services and is a board member of the International Association for CFS/ME, an advocacy group.

Leonard A. Jason, Ph.D

Q: What is it about chronic fatigue syndrome that makes it so challenging for many people patients themselves, doctors, family members?

A: Fatigue is a universal human experience, and in fact most people are very hard-working and feel fatigued a lot of the time. And severe fatigue is one of the most common complaints that people bring to their physicians. Because so many people have general fatigue and continue to function, they think, "Whats that? Thats not a disease, its just a fact of life." So theres a perception both among medical personnel and the lay public that it's something that you push yourself through, you deal with it. Theres a tendency to think, "Well, you're stressed out, get some better sleep, take some antidepressants." With heart disease or cancer or AIDS, you have an immediate feeling from your family, your work associates, your friends, that this is something we need to be sympathetic to, we need to make accommodations for. Whats strikingly different about this illness is that the majority of people not only have to deal with a particularly debilitating health problem, they also have to deal with the stigma and societal reaction and disbelief and illegitimacy, and that is crushing. Your work colleagues say youre malingering, medical personnel say theres nothing they can find so they'll refer youto a psychiatrist, and your friends begin to complain that youre never calling them, you've rejected them. So this person is in the whirl wind of a terrain of disbelief that is probably in some ways unique.

Q: Has the perception of C.F.S. changed over the years?

A: I spend a lot of my time giving talks to audiences of people I dont know, and I feel its very different today vastly different than 20 years ago. At that time, no one had heard of it and there was almost universal disbelief. Today, that is much, much less. I don't mean to suggest that there is no skepticism remaining. Its still present. But it is my opinion that the people who are skeptical haven't really looked at the literature. It's easy to nurse your skepticism when you haven't really bothered to look.

Q: How much would you associate the skepticism with the name chronic fatigue syndrome, which is used in the United States, instead of names like myalgic encephalomyelitis or myalgic encephalopathy, which are more common in other countries?

A: The name is unfortunate. It's a terrible name, because fatigue is the focus and that is differently experienced by people who are healthy than by people who have this illness. I do think if we called bronchitis or emphysema chronic cough syndrome, you'd probably have very little respect for those people, but a name that's more medical sounding changes peoples perceptions. When you have a more medical-sounding name, you're saying the illness is not something fluffy, to be downplayed and ignored, and health care personnel think of it as more serious, more debilitating. I hope there will be a new name, but the problem is you don't change names lightly, even bad names, because people come to recognize an illness by a name. I think changing it will confuse a lot of people, so it better be a new name that has broader acceptability among patients and researchers. There is a movement developing around the world of people using different terms, and some are using the term M.E./C.F.S. The C.D.C. and the CFIDS Association are two of the last large organizations in the United States who have not come aboard.

Q: There are many people who think C.F.S. is just a form of depression. What's the connection between the two?

A: The fast answer is, if you want to do a quick diagnostic test, you could say, if you were well tomorrow, what would you do? And the person with C.F.S. would give you a list of things that they want to get back to in their life, and the person with classic depression would probably say, I dont know. Eighty percent of people who have depression have fatigue, but it's not their most serious complaint. They might have sleep problems, and some cognitive problems that are common, and they can end up being brought into the case definition for C.F.S. Some people with this disease do have depression. If you basically have a person who says they were feeling pretty good, now they're sick, and then they get depressed, they could have depression as well as the illness. The real critical problem is when you have a person who has solely depression and does not have this illness, but has fatigue. So if your case definition is imprecise and you blur the categories, and that brings into it people who dont have the illness, you ultimately have problems with estimating how many people have it.

Q: Why does the estimate of how many people have the illness matter?

A: This all goes back to case definition. If it includes people who don't have the illness, some might say that at least there are advantages to that because it gives C.F.S. higher rates and more attention. So if there are millions of people with this illness, it might make the policy people take it more seriously. I think one needs to be wary of that, because if you do research with this broader group of people, and some of them don't have the illness, and the question is what is the biologic data, how do you interpret that? If you have patient samples that are different, ultimately what will happen is its very hard to find genetic or biological markers because there's been such imprecision in how its been identified. So what happens is that people say, "We can't find anything, it must be psychogenic."

Q: You were diagnosed with C.F.S. many years ago. How did that affect you?

A: That triggered my interest. I got C.F.S. in 1990 after having mononucleosis, and ended up having to leave my work for about a year and a half. I said to myself, "Well, gee, if this is affecting me like it is, I should try to do some research." I knew a little bit about it, beforehand, and then I started reading the literature. The epidemiology done by the C.D.C. was atrocious. What I read was that this was an extremely rare disorder that affected less than 20,000 people, that it was primarily psychological, that it affected primarily upper-middle-class people, that it had a case definition that was put together by consensus and not by research methods, and that it had a name that was pretty trivializing. The prevalence research was very poorly done. The tests they were using were inappropriate and had a real bias for psychiatric morbidity. I realized that one needed to do basic work in diagnostics and basic work in epidemiology. I looked at it and said, "Hey, Ive got enough work here for the next decade." It was a real work opportunity for me.

Q: How did you recover?

A: I would say that it was a very slow process. I had the good fortune that most people don't have, in that I had resources. I was a tenure-track professor with a good income who had people rooting for me, and nobody every questioned me or said youre making this up, or its not serious. Everyone knew I was a very hard worker, and they wanted me back. How many people who get sick with this have that opportunity? So they made it possible for me to build myself back up. I had benefits and a full salary. I had a work setting, and a friendship setting and a support setting that most people don't have. Most people, the first thing that happens is they lose their job, and then they don't have enough money. I'm still somewhat careful about how much I do and what I commit to. I think of myself as being 70 to 80 percent back, not 100 percent.

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