a special program of the National Emergency Medicine Association (NEMA)
Transcripts: 500-1 to 500-5
Week: 500.1 Guest: Katrina H. Berne, Ph.D. Topic: Chronic Fatigue Immune Dysfunction Syndrome- Part One Host: Richard Roeder Producer: Ed Graham
NEMA: This is a five part series on Chronic Fatigue Immune Dysfunction Syndrome. My guest is psychologist Dr. Katrina Berne, author of Running On Empty and herself a CFIDS sufferer.
NEMA: Dr. Berne, in 1995, does everybody agree there is such a thing as Chronic Fatigue Immune Dysfunction Syndrome or I assume when we're using that term, that's synonymous with what was called Chronic Fatigue Syndrome?
BERNE: Yes. The two terms are both in common usage. Chronic Fatigue Immune Dysfunction Syndrome addresses another part of the illness in addition to the fatigue. It's not 100% recognized although the medical community is more and more recognizing that it is a real illness and that we do have to contend with it but there are still those who say it's a fad diagnosis and it doesn't exist.
NEMA: What brought you to the study of this deficiency?
BERNE: My own experience with the illness as well as what I saw as a large demand of the community for people who have the illness to be understood and taken seriously and receive help.
NEMA: And talk a little bit about your history in terms of how you discovered something was happening that needed to be addressed and why you came to the conclusion this is what it was.
BERNE: The onset for me was 11 years ago of some unexplained symptoms and they persisted. They didn't just go away and when they didn't just go away I started looking into it but it took me two years to get a diagnosis because at that time the illness was even more poorly understood than it is now. So I went to a number of specialists and at that time the illness was diagnosed on the base of testing for Epstein-Barr Virus antibodies. We have since learned that that is not the cause. Viral reactivation does take place in the disorder.
NEMA: I know at one time that was considered to be one of the main culprits but then I remember seeing statistics, six, seven, eight years ago that it existed in maybe 50%
or 40% of people that had Chronic Fatigue but not in all. Is it seen to be a concomitant factor or is it coincidental?
BERNE: When you're looking at immune disregulation, you will see reactivation of viruses that were otherwise latent, meaning that they're in a dormant state and they're not active but if the virus becomes reactivated then we need to look for the reason.
NEMA: What is, as we speak, assumed to be the cause or causes of this immune system dysfunction?
BERNE: We don't know exactly. We've gone from thinking that this is a viral disorder to seeing it as an immune disorder and now we see it as a neuro-immune disorder because the brain is very much involved in the disorder, the central nervous system is much involved, and the interaction among body systems is now seen as the way we need to approach this chronic illness and possibly some other ones that aren't well explained. In terms of a causal agent, we really don't know if there's just one causal agent or if there are several but it's still assumed that this is a viral disorder although there are other co-factors in developing the illness and those would include stress or toxic exposure of some kind, genetic pre-disposition to developing the disorder or major life changes such as surgery, childbirth, things of a traumatic nature.
NEMA: Join me for part two on Chronic Fatigue Immune Dysfunction Syndrome with Dr. Katrina Berne.
Week: 500.2 Guest: Katrina H. Berne, Ph.D. Topic: Chronic Fatigue Immune Dysfunction Syndrome- Part Two Host: Richard Roeder Producer: Ed Graham
NEMA: This is part two in a five part series on Chronic Fatigue Immune Dysfunction Syndrome with psychologist Dr. Katrina Berne, author of Running On Empty, published by Hunter Books. BERNE: In terms of a causal agent, we really don't know if there's just one causal agent or if there are several but it's still assumed that this is a viral disorder although there are other co-factors in developing the illness and those would include stress, either physical or emotional or cognitive stress over a long period of time or toxic exposure of some kind, genetic predisposition to developing the disorder or major life changes such as surgery, childbirth, things of a traumatic nature.
NEMA: I'm going to throw a real tough one in front of you because in limited time, this is a very hard question to get you to answer but take your best shot. Would you describe the meaning of a term that we all hear now on everything from boxes of cereal to vitamin pills. It's a regular part of the vernacular now, the "immune system."
BERNE: Oh the immune system is very complex. You're right. That's a tough question to answer. The immune system doesn't have a central organ the way other body systems do. When you think of the cardiovascular system, the home base would be your heart and so on and as I said, for the central nervous system the brain is the central organ. The immune system is all over the body. It's in the blood stream, it's in the lymph nodes and it doesn't have a central organ so it's not real well understood but its main function is to distinguish between what's me and what's not me and anything that's not me the immune system will mount a response against it.
NEMA: And that response is facilitated through various and sundry cells, many of which are produced in the bone marrow and basically do you see drastically different profiles of these cells in people who you've diagnosed with this disorder versus those who do not have the disorder.
BERNE: As a psychologist, I don't actually perform medical tests but I'm very familiar with the literature and I work very closely with physicians who treat the disorder and what we find is that there are certain immune parameters that are abnormal. Routine testing won't show anything but certain specific tests will show abnormalities.
NEMA: What are what you refer to in the book as the eight symptoms of this disorder?
BERNE: Actually that's changed. The Centers for Disease Control had initially developed a checklist of symptoms that were used in defining the disorder primarily for research purposes and they have since redefined the illness so eight is no magic number here. It's just what was used at the time. The primary symptoms of the illness are of course debilitating fatigue and it's fatigue of a different type and a different severity than most people experience even though most people do experience fatigue from time to time. In addition there are a number of other types of symptoms affecting virtually every body system. Muscle and joint aches are very common, headaches of a new type that weren't there prior to the disorder. The fatigue by the way is generally exacerbated by exertion of any kind.
NEMA: Join me for part three on Chronic Fatigue Immune Dysfunction Syndrome with Dr. Katrina Berne.
Week: 500.3 Guest: Katrina H. Berne, Ph.D. Topic: Chronic Fatigue Immune Dysfunction Syndrome- Part Three Host: Richard Roeder Producer: Ed Graham
NEMA: This is part three in a five part series on Chronic Fatigue Immune Dysfunction Syndrome. My guest is psychologist Dr. Katrina Berne, author of Running On Empty. I asked Dr. Berne about some CFIDS symptoms other than fatigue.
BERNE: People with Chronic Fatigue Syndrome who are active in any way or stressed in any way who go out and say "Well gee, I'm feeling better today. I'll think I'll jog," generally have a severe setback. In addition, cognitive function problems which means problems in thinking and processing and learning information are very prominent such as short term memory, word finding difficulties, inability to calculate, to stay focused, to comprehend what is read and there are visual disturbances as well as chills and night sweats, shortness of breath, balance disorder, sensitivity to heat and cold, alcohol intolerance, many symptoms of Irritable Bowel Syndrome including abdominal pain, diarrhea, constipation, gas, those types of things and some unusual sensations - numbness and tingling, dry mouth, dry eyes. Very often, people with the disorder have low grade fever although what their normal temperature might be is usually a low body temperature.
NEMA: How many people do you estimate in the United States may be suffering this disorder? No doubt, it's going to get trickier and trickier to know about that when it's in its milder versions but do you have a sense of what that might be? BERNE: Probably in the millions. Now the estimates have ranged from many hundreds of thousands all the way up to 10 million people. So I don't think it's unreasonable to assume that two to five million people in the population have this disorder.
NEMA: Do you remember when this disorder was called the "yuppie flu?"
BERNE: Yes I do.
NEMA: Why is that? Why was it called the "yuppie flu?"
BERNE: It seems as though it was called the "yuppie flu" because most of the people who in the face of being told by their physicians that they were full of it or that they were just depressed or whatever, those who had the money and the consumer knowledge to press on for a diagnosis were probably primarily those who we would consider yuppies because they've got the means to do it.
NEMA: So do you see any particular group in which it's more prevalent when you're regarding things like age, gender, race?
BERNE: The studies in this country show that it's more common in women but some studies in other countries have shown that it's about a 50-50 split between men and women. It does seem to be more prevalent in women. It's more prevalent in people who are in their prime years, their most productive years, and that would be the 30s so the age group of the 20s to the 40s or 50s would have the predominance of the CFIDS population but the illness also exists in children and it exists in the elderly.
NEMA: What kind of a factor does it seem that heredity is?
BERNE: It seems as though a person can inherit a predisposition to get the disorder and that would make the individual more likely to develop the disorder than someone without that same genetic make-up and we're not sure exactly what that is but we're pretty sure about it because in families, blood relatives will tend to come down with the disorder.
NEMA: Join me for part four on Chronic Fatigue Immune Dysfunction Syndrome with Dr. Katrina Berne.
Week: 500.4 Guest: Katrina H. Berne, Ph.D. Topic: Chronic Fatigue Immune Dysfunction Syndrome- Part Four Host: Richard Roeder Producer: Ed Graham
NEMA: This is part four in a five part series on Chronic Fatigue Immune Dysfunction Syndrome. My guest is psychologist Dr. Katrina Berne, author of Running On Empty, a comprehensive work on this disorder that affects millions of Americans.
NEMA: One of the problems or many of the problems stem from the fact that this disorder disables someone, makes them feel very depressed frequently and they end up feeling guilty over the impact of their disorder on those around them. Talk a little bit about some of the things you talked about, anger and guilt in this disorder.
BERNE: Okay. What happens is people with Chronic Fatigue Syndrome generally don't look ill and unless you know the individual very well, you don't see the subtle signs of illness and so other people around the individual with Chronic Fatigue Syndrome will tend to have the same expectations of that individual that they did before they got sick because the symptoms can be very invisible and sometimes very subtle so other people don't change their expectations and then when the person with the illness can't follow through on what is expected, there is a lot of guilt and the feeling that you're letting people down and sometimes an inability to work because in many cases, this is a disabling disorder and so people who are used to being very productive and being go-getters and have a lot of pride in their work and take a lot of identity from the type of work they do are no longer able to work and people around them look at them and they're not in a wheel chair and they don't have purple spots and so very often other people just don't understand. Also the symptoms can change dramatically over short periods of time and so an individual may be able to participate in an activity in the afternoon and then be wiped out by evening and not be able to do what might be considered normal responsibilities and other people in the environment, spouse, family members, friends, they feel very neglected as a result of symptoms that they can't even see.
NEMA: Okay. So I find myself fatigued in a way that I don't recognize from any past experience in my life. I'm having some of these other symptoms that you've described. I go to my doctor and I get that blank look or the incredulity in his face. What do I do next? Who do I go to? Where do I find them and how do I know I'm going to get a different response than my own doctor who said "Oh, I think you just are off your rocker?"
BERNE: The best way to find a physician is usually through either a friend or someone you know who's been diagnosed with the disorder and if they've had a good experience with a physician then that may be someone to try or a local support group.
NEMA: And the specifics of diagnosing this involve first acknowledging the possibility and then running some very special tests, right?
BERNE: Well, it's not quite that simple. If we knew what the causative agent was and if the immune parameters were the same for everyone with the disorder and we had a marker that said you have it versus someone else who doesn't have that marker and doesn't have it, it would be a lot easier. At this time, diagnosis is typically based on the patient's symptoms, on findings in a physical exam, and on excluding other disorders that may have similar symptoms. NEMA: And among some of those other disorders are what?
BERNE: Multiple sclerosis, lupus, arthritis - it depends on the type of symptoms that the individual is having of course.
NEMA: Join me for part five on Chronic Fatigue Immune Dysfunction Syndrome with Dr. Katrina Berne.
Week: 500.5 Guest: Katrina H. Berne, Ph.D. Topic: Chronic Fatigue Immune Dysfunction Syndrome- Part Five Host: Richard Roeder Producer: Ed Graham
NEMA: This is part five in a five part series on Chronic Fatigue Immune Dysfunction Syndrome. My guest is psychologist Dr. Katrina Berne, author of Running On Empty.
BERNE: At the present time, the treatment of CFIDS is primarily targeted at specific symptoms. We don't have a cure and we don't have any medications that are what you'd call a magic bullet, that would help everyone with the disorder and bring about significant relief so in aiming treatment primarily its symptoms, the goal there is to alleviate muscle aches and pains, to treat depression which is generally something which accompanies any chronic illness, to offer medication for gastro-intestinal difficulties and allergies which are very common in people with Chronic Fatigue Syndrome and also sleep disorders. Early on in the disease, people tend to sleep almost around the clock and then there's kind of a pattern or a course that the disease usually takes. Later on the sleep disorder changes and it becomes a feeling of what many people call being "tired and wired," being exhausted and drained and yet unable to sleep and so treating the sleep symptom itself, treating that portion of the disease will often affect other symptoms in addition to the sleep.
NEMA: Is there a most common thread that you have heard in doing the research that you have done and talking to the people you've talked to, is there a certain phrase you hear come out of their mouths about when the onset of this disorder took place? Do they frequently say, "You know, I had a flu and I just never got over it," or this or that - do you hear something that gets repeated a lot?
BERNE: Just like that. About two thirds of people can identify a certain time of onset. Sometimes even the day and the hour. One patient said "It was Thanksgiving day or it was the day before Thanksgiving and I was at the airport planning to go visit my parents when I suddenly felt horrible from head to toe and I never recovered." In many people though, what we're finding is that if you look back, if you take a history and look back at their symptoms, that they may have had problems with energy over time and allergies and frequent colds and flu and low body temperature and so what you hear is kind of a fertile ground for CFIDS to develop and then in the face of either exposure to an infectious agent or toxic exposure or one of the types of traumatic events that we talked about earlier that they will become full blown so it is possible to have a milder form of the illness and maybe mild to the point of not even being noticeable as an illness, just as
some symptoms here and there and then something will kick it in and it becomes full blown.
NEMA: What does the research picture look like? Is there a lot going on or is there not near enough going on right now?
BERNE: There's not nearly enough going on. Funding has been increased for research but to date, most of the research that has taken place has been privately funded rather than funded through the government, however, the National Institutes of Health and Centers for Disease Control and Prevention are finally taking some action and there are some studies under way. There are a number of research centers across the country where different aspects of the disorder are being studied.