Interview: Dr. Bryan Carter
Study of Teens with CFIDS Raises New Research Questions

Interview by Rebecca C. Moore

Dr. Bryan Carter (BC): Yes. I kind of stumbled into this area of research about eight years ago working with Dr. Gary Marshall, a pediatric infectious disease specialist and one of the co-authors of the Pediatrics paper. He was frustrated about what to do for the kids he was seeing with CFS-like conditions, because most of the virological and immunological tests he ran would not show consistent or positive findings for other conditions that would explain his patient’s symptoms. As a physician, when he saw the impact it had on kids and families and then saw what appeared to be mood-related changes, he wondered whether this was primarily a psychiatric or psychological condition.

BC: Initially, we just wanted to study CFS. The big question that comes up is, "Is this depression?" We first got local funding for a small study where we evaluated new referrals. We looked at the psychological profiles of young people with CFS compared to young people who were diagnosed with depression, as well as healthy controls who were primarily being seen for sports physicals. What we found was that the kids with CFS fell in between the healthy controls and the kids with depression. Very few of them reported clinical levels of depression—a few did, but they did not have depression or anxiety at levels like kids who came in for evaluation and treatment of depression—but they had more depression than the healthy controls (see Pediatrics, February 1995)

So part of what we wanted to look at in the juvenile rheumatoid arthritis (JRA) paper was the extent to which the low-grade depressive or anxiety symptoms, and the somatization symptoms, may be due to the fact that these patients are coping with a chronic illness. We thought about JRA as another medical condition that would be reasonable to compare with CFS because there are some similar patterns, in terms of the functional impact, the lengthy course to diagnosis, the fact that both conditions don’t have a set approach to treatment, etc. There are treatments for JRA but none are curative. Mainly they are palliative to help with pain or inflammation.

BC: We were asking whether kids have a similar or dissimilar psychological profile in these two chronic health conditions. And if there was a difference, how could we account for that? One question to be answered was whether the psychological symptoms seen in CFS would be like those seen in any chronic health condition. Other studies have looked at that in relationship to more life-threatening conditions, like cystic fibrosis or multiple sclerosis, but we thought those illnesses weren’t good matches. No one that we know has died from CFS or JRA, but both have a debilitating effect on their young person’s ability to attend school, to participate in activities, to socialize, etc.

BC: As is found so often in comparing patients with CFS with those with other medical conditions, the kids with CFS did have higher levels of anxiety and depression. Again, not many of the kids with CFS fell in the clinical range, but compared to kids who had JRA, they had more psychological distress. They were higher on the somatic complaints, but again, you can’t make a lot out of that because you see so many different systems associated with CFS. Patients with CFS tend to be off the charts in terms of the multiple complaints they present.

RM: You wrote that the kids with CFS had high levels of internalized distress. What does it mean to internalize distress and what do these results tell you about CFS?

BC: Internalizing distress refers to things such as depression, sad mood, feelings of anxiety, worry, maybe feelings of helplessness, overall general negative mood. Externalizing problems tend to be more acting out behaviors, like acting out in school, getting into trouble, being defiant. As you can imagine, for most of the kids with CFS we’ve seen, that’s not a problem. The kids with depression that we looked at early on had much higher incidence of acting out problems, along with their internalizing problems. With these two groups (CFS and JRA), both had a similar level of functional disability. In a general way, both groups were saying, yes, my social involvement and my participation in physical activities are less than most kids, and low for me.

One key factor I feel we need to address infuture research, since it has not been addressed to date, is the fact that a lot of patients with CFS fail to receive validation from the medical community. I think that has to be considered when you have a health condition that a lot of physicians are very skeptical about. And a lot of families I’ve seen have been abused by the system—I mean really mishandled. And I think it’s shameful. There’s no excuse for it.

Eventually, I think we’re going to find a number of subtypes of CFS, as we’re finding with other chronic health conditions, such as cystic fibrosis. I think we’re going to find with CFS that there are different routes to the end symptom presentation. And I think there is going to be one group or sub-groups that have a heavier psychological overlay than others. I’m not saying that’s the majority; I think if anything, it’s around 20–25%. I have a couple of physician colleagues who, because they can’t treat it, they get frustrated and say, "Oh, no, it’s going to be a larger percentage."

But a lot of physicians tend to do that when they don’t know what to do. If their tests don’t prove positive and they don’t find something in their area that they can do, they get very frustrated and often communicate to the families that, in so many words, "Well, we think it’s in your kid’s head." And that’s one of the worst situations we walk in on (as consulting psychiatrists), because the child and the family are often angry at your very presence because they feel they haven’t been validated. And people still think of psychological symptoms or problems in a very negative way, so there’s a negative stigma associated with it.

As often as not, we disagree with the physician. We say, maybe there isn’t something full-blown that you can find in your tests, but there sure sounds like there was a course of illness that doesn’t sound psychological in nature.

BC: Well, for many, they didn’t have any psychological symptoms prior to the onset of fatigue. So the dramatic impact on their lifestyle tends to be the culprit.

To better understand this, we need a community-based surveillance study with a stratified sample. This whole debacle over the misappropriated funds at CDC is frustrating. (See DC Dispatch, page 19.) I was involved in a multi-site group that was going to do the first prospective prevalence study in three cities. We were going to study Louisville, Seattle and Denver, and eventually we were going to go into all the schools on a given day and screen for fatigue-like conditions throughout the entire 12- to 18-year-old population. We had been working for months on designing our instruments and we did three meetings at CDC to set up our approach. And then Dr. Bill Reeves had to cancel the study when the funds weren’t there.

What happens when we study only patients referred to specialty clinics is that we’re seeing a very select sample. You tend to get kids who are more ill. You also tend to hear an awful lot of parents who say, my son or daughter is a high-achiever, rather perfectionistic and exacting, and that’s an interesting observation, something you don’t see in a lot of other medical conditions. But that could just be sample bias because we’re getting clinical populations whose parents have the wherewithal and the knowledge to pursue this.

BC: Exactly. That’s why we want to look at this via a community-based sample. By surveying all the students in a school system, we can find the kids who wouldn’t necessarily come to us through the referral process.

BC: They may serve to perpetuate it. They may serve to exacerbate the symptoms. Again, this is not unique to CFS. I have seen it in juvenile diabetes, cystic fibrosis, kids with cancer—that there’s an interplay with the impact of illness. One of the most frustrating things, being a psychologist in this area of research, is that both lay and medical personnel alike tend to look at things in a very dichotomous, linear way. A lot of times when physicians are making their referrals, it’s either "all in their head" or the patient must have a purely organic condition. We’re learning more and more that there’s a delicate interplay between psychological factors and physical factors.

BC: One thing we’re trying to tease out in this process is this whole area of "attribution". To what does an individual attribute a particular condition? Do they attribute it, for example, to something outside of themselves, beyond their control, something they have very little role in dealing with? Or do they believe that, yes, this is something that happened to me, but I can play an active role in handling it more effectively, and by actively seeking the right kind of care, I can function better and maybe even improve my recovery. That psychological factor, which we didn’t measure in this study but is something we’ll look at in future studies, may play an active role in an individual’s recovery from a number of health conditions.

BC: One thing is probably what you’ve found: Get actively involved in an organization or support group, perhaps via the web, to where you begin to reduce the isolation that comes with your illness. If you don’t know anyone else with the same health condition, you may feel you are the only one who suffers from it. That’s number one. Number two, you have no other validation if the medical community is not giving you feedback that your symptoms represent a valid health concern. So becoming an active problem-solver in how you approach it would, I think, be one of the most effective strategies, even though it doesn’t mean you’re going to get better right away. Those kind of active, problem-solving strategies of information gathering, learning about the resources, talking to other patients, finding a physician who’s not going to "fire" you for not getting better—it’s atrocious, but it happens—those kinds of things are going to enhance potential recovery for most people.

BC: We wanted to find out what these young people look like a few years down the road. Have they gone on to develop other conditions or to get diagnoses that would have explained their symptoms? How were they functioning in their social and physical activities? Were their symptoms better? Has it impacted on their ability to attend school or work? And then we also wanted to see if there are any variables that seemed to be associated with improvement or lack of improvement that would help us predict which individuals might have more trouble or less trouble, which ones may need more intensive intervention in one area more than others.

We ended up getting 15 of our original group of 25 to participate, an average of five years later. At follow up, what we found, interestingly, was that fewer reported symptoms but the symptom pattern was very similar. For example, 13 had had difficulty concentrating, and seven were still reporting that symptom five years later. Forty-seven percent still had symptoms of chronic fatigue; 33% reported that their activity level was still below average. Relative to when they were first diagnosed, one patient rated their present condition as "much worse", two were "mildly better", four "moderately better" and eight (53%) said they were "much better". Almost all said they still take naps daily ranging from 1–5 hours at a time, which is unusual for a young adult population.

BC: Yes, it does. Sixty percent had jobs, and one third of them said their symptoms have affected their job, in terms of productivity or attendance. Two thirds reported still feeling differently about themselves, feeling like they were just not quite back to what they felt would be their "old self". About two thirds said their peers recognized their CFS as a real illness—in fact, they felt more validation from their peers than from anybody—but only a few said their peers treated them differently because of the illness. That says a lot about strong peer relationships.

BC: Just as symptoms had gone down, distress had gone down. But this is interesting from the standpoint of a recovery or rehabilitation perspective. By parent report, the children who were reluctant to change their environment for fear of making their symptoms worse—maybe they avoided too much activity or avoided a lot of social involvement—those young people tended to be doing worse five years later with their CFS symptoms. These patients also showed less change on depression and anxiety. Keep in mind that is a correlation and doesn’t imply causation.

BC: By self-report, too, the subjects who reported spending more time at home and less time doing chores at home and fewer physical activities at home had less favorable outcome. However, this group may have been more symptomatic anyway. We’re finding some interesting correlational stuff, but it’s hard to control for overall disease severity and whether that’s predictive. This gets to that tough area of deciding how much activity and how much involvement to push yourself to do, versus succumbing to the condition and really withdrawing. I worry that, in the wrong hands, this information could be interpreted the wrong way.

BC: We’d like to try. Depression and anxiety may relate to a coping style, which is what’s helpful. In my bone marrow transplant kids, we were trying to predict which kids who would have more psychological distress during transplant, because they are isolated in a room for at least a month. We found that the kids who, even prior to cancer, had coping skills that were characterized by more repression or avoidant strategies got more depressed and withdrawn, versus the kids who wanted to know more about the condition or treatment or what they could do.

To study this more in CFS, we need a larger sample of patients. When we have this small sample size, it’s hard to draw conclusions. You look for trends so these can be followed up in larger, multi-site studies.

BC: Yes, but some of the cognitive therapy studies bother me a lot, because they kind of present these as being treatments for CFS. I really believe they are more efforts at helping with coping skills. It seems there is symptomatic improvement in some people, but it bothers me that some are taking that to mean CFS is a primarily psychological disorder in all patients with CFS because cognitive behavior therapy makes it better. That’s a big leap, and rather circular thinking.

BC: We’re stuck on the intervention model, but we probably should look more at a rehabilitation model. It would be more of a multidisciplinary approach. I think it would be exciting to establish a few major centers around the country where teams of like-minded professionals from different specialties would stick with the patients for the duration. You’d have a neurologist, a cardiologist, an infectious disease specialist, a psychologist, a psychiatrist, physical therapy, occupational therapy, educational specialist and so on. You could tailor each patient’s intervention to each patient’s profile and their subtype.

BC: We’d really like to get better at this whole issue of subtypes. I think if you can get to that, you’re going to find treatments that are going to be geared to different types of presentations of CFS. That’s really going to be an important step. It’s going to have to be a collaborative project where you’re looking at a host of variables, including a lot of medical evaluation of the primary hypotheses of organic conditions that may contribute. But because there is an amount of psychological morbidity, it’s mandatory that we look at that, too.