Interview: Study of teens with CFIDS raises new research questions

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This article is reprinted with permission from the CFIDS Chronicle Vol. 12 No. 4 July/August 1999.

Bryan D. Carter, PhD, a pediatric psychologist, and his colleagues from the school of medicine at the University of Louisville (Gary Marshall, FM, Ashley Bryant-Noojin, PhD, David Causey, PhD, Joseph Edwards, PhD, Kenneth Schikler, MD) and Indiana University (William Kronenberg, PhD) Schools of Medicine have been studying CFIDS in adolescents since 1991. In the May 1999 issue of the journal Pediatrics, they published a paper titled “Psychological Symptoms in Chronic Fatigue and Juvenile Rheumatoid Arthritis.” They also recently completed a five-year follow up study of a group of patients from their original study, published in Pediatrics in 1995. Rebecca Moore, a leader in The CFIDS Association’s youth program, interviewed Dr. Carter about his work. Dr. Carter is an Associate Professor of Child and Adolescent Psychiatry and an Associate in Pediatrics at the University of Louisville (Kentucky) School of Medicine.

Rebecca Moore (RM): Have you had a chance to get to know a number of kids with this illness?

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.

RM: What has been your goal in working with the kids?

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 palliatve to help with pain or inflammation.

RM: Let’s talk about that study a bit. Can you tell me a bit about the purpose of the study, what questions you were asking and what you found?

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.

RM: What did you find?

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 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 tow 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 in future 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 heal 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.

RM: Do you believe this mistreatment by the medical community could account for the differences you found in the scores between the JRA and CFS kids?

BC: We don’t know. And I think that’s the big issue and the big question mark that comes out of our study. We’re not approaching CFS by looking for this to be a completely psychological or psychiatric syndrome. We’re saying there’s a different level of psychological distress in kids with CFS compared to kids with JRA, and we’re asking why that is. One speculation would be that CFS patients don’t get a lot of validation. I talked to a mother on the phone just yesterday whose daughter is doing great now, but she said, “It’s really a shame, she’s at the end of the school year, and I don’t think any of the teachers ever really believed that my daughter was ill. She missed so many days and they were really reluctant to let her make some work up. They really treated it as though she was truant, not ill.” I think we really have to account for the emotional impact of that kind of treatment when we are looking at psychological distress in patients with CFS.

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 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.

RM: You’ve said that you believe the primary problem in children with CFS is a physical one. What tells you that the distress seen in them is secondary to their physical illness?

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. 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 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.

RM: It may also be that that type of a child is more self-aware and has higher expectations for self performance. When my grades started to go down when I got sick, I notice I knew something was different and I could articulate that. A lot of kids might not be able to articulate what it is that’s different when non-specific or weird symptoms start happening to them.

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.

RM: There was one statement in the paper that was not clear to me. You write, “psychological factors may play a more active role in debilitating chronic fatigue in youth than a chronic, non life threatening illness.” What role do you suggest that the psychological factors may play?

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 that there’s a delicate interplay between psychological factors and physical factors.

RM: Can you give an example? What type of psychological factors would perpetuate a child’s fatigue?

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 in future studies, may plan an active role in an individual’s recovery from a number of health conditions.

RM: Is it more difficult for a child to have that kind of an empowered attitude if most people say there is no effective treatment for their conditions?

BC: As a clinician, I would think undoubtedly so. In JRA, it’s different because, while there are not curative approaches, there are a lot more palliative and symptomatic treatments offered. For a lot of young people, a diagnosis of CFS means no treatment.

RM: Can you give some examples of things that parents and children can think about to help them have a more empowered role in their care, to believe there are more things they can do to help themselves?

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 healthy 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.

RM: Let’s talk about the five-year follow-up study that was done with the same group of kids. What questions did you seek to answer in this study and what did you find?

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 are 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 the still take naps daily ranging from 1-5 hours at a time, which is unusual for a young adult population.

RM: So it sounds like it still impacts their functioning.

BC: Yes, it does, Sixty percent had jobs, and one their 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.

RM: I’m also interested to know, since you repeated the same instruments for the paper that was just published, did the kids show the same level of internalized distress? Or with time, were they feeling better about the situation?

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.

RM: How would you determine causation?

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.

RM: Are you saying an active approach to problem solving is important for coping and might help you feel better in the long run?

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.

RM: What approach do you think would be most helpful for kids with CFS?

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 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.

RM: You’ve gathered a lot of interesting data and brought up interesting questions. What questions do you want to ask next?

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 it’s mandatory that we look at that, too.

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