Lifetime Live TV Show Transcript

Media Alert:   4/24/00

Monday, April 24, 2000

From Lifetime Television and ABC News, with your hosts Deborah Roberts and Dana Reeve, this is your Lifetime Live......

Deborah: Hello there and welcome to Lifetime Live. I'm Deborah Roberts.

Dana: And I'm Dana Reeve. And besides these stories today, we'll be learning a little bit more about chronic fatigue syndrome. It's often misdiagnosed, affects more women than men, and it can be extremely debilitating.

(Lifetime Live and music)

Dana: It's one of the most underdiagnosed and debilitating disorders - chronic fatigue syndrome. There's no test to identify it and so far no cure. And women are particularly at risk. Chronic fatigue syndrome doesn't cause death, but as you're about to see, it can practically take away your life.

(Tape of Jane Stockman)

Jane: It's like hitting a brick wall. You'll be moving along, doing something very minimal, and all of a sudden this overwhelming fatigue will come.

(Dana's voice over the tape): Jane Stockman led an active life before chronic fatigue syndrome struck. She was a civil engineer who put in 10 to 12 hours a day at work and went out dancing at night.

Jane: With work and for pleasure, I was getting to travel around the world and then at home I was pretty athletic. I liked to jog and spent my weekends hiking.

(Dana's voice over): In 1994 Jane had to come back early from a business trip because she thought she had the flu.

Jane: I came home, got into bed and slept straight through for the next four days.

(Dana's voice over): For years complaints like Jane's were not taken seriously by the medical community. There is no definitive test, and chronic fatigue syndrome remains difficult to diagnose.

Jane: Yeah, I think in the general population many people don't know about it. I think the name has trivialized it quite a bit, and so people, when they do hear about it, don't take it seriously enough to really read the articles.

(Dana's voice over): As soon as she was diagnosed, Jane began reading everything she could find on chronic fatigue syndrome.

Jane: I've learned that it's a complex illness that hits many different systems within your body, and I think that that's been a large part of the problem in finding answers to this disease because the doctors are trying to figure out how these things all fit together.

Dr. Richard Podell, Chronic Fatigue Syndrome Specialist: When women are in their estrogen years, they seem to be more vulnerable to all sorts of autoimmune illnesses, and it may be that part of what happens in chronic fatigue syndrome is a normal infection that their body then reacts to - allergy isn't quite the word - it's not quite an allergic reaction, but it sort of feels that way. We know that women in general get more allergic-like reactions in the face of other illnesses.

(Dana's voice over): Although Jane is doing much better, she's still too sick to go back to work and has to continue to support herself with disability compensation.

Jane: There are many chronic fatigue syndrome patients much worse off than I am. They're wheelchair-bound, they're bedridden. Before getting sick, I always thought of my limits as being infinite. Now it just depends on how much I want to put into something, and my limits have very much closed in on me so that if I go outside those limits, my symptoms are going to greatly exacerbate and will probably put me in bed for days - if not weeks. It's really important to me to have a productive life and to be giving something to society. I think we need a better awareness of this disease and not writing it off as laziness because I don't know a single person that I've talked to who would choose this life.

(End of tape)

Dana: Joining us to talk about this illness is Kim Kenney, President and CEO of The Chronic Fatigue and Immune Dysfunction Syndrome Association. Welcome, Kim.

Kim: Thank you, Dana.

Dana: What a debilitating illness. Now obviously fatigue is one of the symptoms. We feel tired from time to time. How do we know if we're just feeling tired? Are there other symptoms?

Kim: The fatigue in chronic fatigue syndrome is a bone-crushing fatigue. It's worse than the type of fatigue medical residents experience when they're on 48-hour and longer shifts. Also, accompanying the fatigue are some other symptoms. There are cognitive problems, like a lack of concentration and inability to process information clearly. There are flu-like symptoms like swollen nodes, sore throat, the pain in the muscles and the joints, that cloudy-headed feeling you get when you've got the flu. There's also unrefreshing sleep. You can sleep for 24 or 48 hours and wake up and feel like you haven't had any sleep at all. The most hallmark symptom is a relapse of symptoms following cognitively or physically stressful activities. Anything as simple a task as trying to balance your checkbook or as vigorous as trying to do a bit of exercise can send people back to bed, not just for hours, but for days.

Dana: And what we really should point out is these are ongoing. This isn't just a day or a week when you've been doing lots of things or working hard.

Kim: That's right. To meet the strict case definition, you have to be ill for six months. Although, you know, as a vigorous person, if you've been in bed for three months, that's unusual. You shouldn't have to wait three more months before you seek medical attention. This can extend on for years.

Dana: In the tape, she referred to the fact that it's often misdiagnosed, and I would imagine that must be true. And I imagine there is a terrible stigma that people might think you're lazy or you're just trying to cop out.

Kim: Right. "You have the 'I want it all' lifestyle, and you just can't cope anymore," is what a lot of people get. A lot of people, when I tell them my work is on chronic fatigue syndrome, they say, "Ah, I have that, too!" It's just very much trivialized. The reason that it's so underdiagnosed - and we know from studies that only about 10% of the people who meet the strict case definition will be diagnosed by a medical professional - is simply because doctors aren't looking to make this diagnosis in their practice. They're not aware of how to make the diagnosis. The symptoms do mimic other illnesses, and it does take a while to rule out other possible causes for the symptoms.

Dana: Now what are some of the treatments that are out there? Is there any hope?

Kim: There is some hope. Treatment right now is purely symptomatic. You have to take piece by piece - try to improve the quality of sleep, try to reduce the pain, try to attack the cognitive problems through both medications and behavioral strategies. But beyond that, there is a drug that's in the final stages of approval through the FDA called Ampligen. There are also some interesting new studies being done on some neurosurgical repair of the lower brain stem that may prove to be helpful in a subset of patients.

Dana: At the moment, do people ever get better?

Kim: People do get better. The clinicians that take care of a lot of these patients generally say that about a third get better, a third stay in kind of a remitting/relapsing pattern of illness, and a third get progressively worse. Studies show that you have the greatest likelihood of getting better within five years of becoming ill, and after that your chances do go down. But people do sort of spontaneously start to improve even after long periods of illness, so there should be hope for everyone.

Dana: Well, Kim Kenney, thank you very much for joining us.

Kim: Thank you, Dana. My pleasure.

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