Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).
Sunday, June 1, 2008
I am grateful to Dr. Lenny Jason for sharing his own battles with CFS/ME. I am also delighted to see that the IACFS/ME has taken the position to assume a leadership role in advocacy issues on behalf of our community of suffering.
May 30, 2008
Expert Q & A
Learning Firsthand About Chronic Fatigue Syndrome
By DAVID TULLER
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.
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, “What’s that? That’s not a disease, it’s just a fact of life.” So there’s a perception both among medical personnel and the lay public that it’s something that you push yourself through, you deal with it. There’s 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. What’s 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 you’re malingering, medical personnel say there’s nothing they can find so they’ll refer you to a psychiatrist, and your friends begin to complain that you’re never calling them, you’ve rejected them. So this person is in the whirlwind 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 don’t know, and I feel it’s 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. It’s 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 people’s 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 don’t 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 don’t 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 it’s very hard to find genetic or biological markers because there’s been such imprecision in how it’s 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, I’ve 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 you’re making this up, or it’s 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.
Publish date: 5/30/2008