Interview: Dr. Bryan
Study of Teens with CFIDS
Raises New Research Questions
Interview by Rebecca C.
Originally published in The CFIDS
Chronicle, July/August 1999
Bryan D. Carter, PhD, a pediatric
psychologist, and his colleagues from the schools of medicine at the University
of Louisville (Gary Marshall, MD, Ashley Bryant-Noojin, PhD, David Causey, PhD,
Joseph Edwards, PhD, Kenneth Schikler, MD) and Indiana University (William
Kronenberger, 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 Associationís 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 patientís 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
RM: What has been your goal in working with
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 depressionóa few did, but they did not have depression or
anxiety at levels like kids who came in for evaluation and treatment of
depressionóbut 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 donít 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.
RM: Letís 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 werenít good matches. No one
that we know has died from CFS or JRA, but both have a debilitating effect on
their young personís ability to attend school, to participate in activities, to
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 canít 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 weíve seen,
thatís 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 Iíve seen have been
abused by the systemóI mean really mishandled. And I think itís
shameful. Thereís 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 donít know. And I think thatís the big
issue and the big question mark that comes out of our study. Weíre not
approaching CFS by looking for this to be a completely psychological or
psychiatric syndrome. Weíre saying thereís a different level of
psychological distress in kids with CFS compared to kids with JRA, and
weíre asking why that is. One speculation would be that CFS patients donít
get a lot of validation. I talked to a mother on the phone just yesterday
whose daughter is doing great now, but she said, "Itís really a shame,
sheís at the end of the school year, and I donít 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.
|"A lot of
families Iíve seen have been abused by the system. We really have to
account for the emotional impact of that kind of
Eventually, I think weíre going to find a
number of subtypes of CFS, as weíre finding with other chronic health
conditions, such as cystic fibrosis. I think weíre 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. Iím not saying thatís the majority; I think if anything, itís
around 20Ė25%. I have a couple of physician colleagues who, because they canít
treat it, they get frustrated and say, "Oh, no, itís going to be a larger
But a lot of physicians tend to do that
when they donít know what to do. If their tests donít prove positive and they
donít 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
itís in your kidís head." And thatís 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 havenít been validated. And people
still think of psychological symptoms or problems in a very negative way, so
thereís a negative stigma associated with it.
As often as not, we disagree with the
physician. We say, maybe there isnít something full-blown that you can find in
your tests, but there sure sounds like there was a course of illness that
doesnít sound psychological in nature.
RM: Youíve 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 didnít 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 werenít there.
What happens when we study only
patients referred to specialty clinics is that weíre 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 thatís an interesting observation, something
you donít see in a lot of other medical conditions. But that could just be
sample bias because weíre 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 noticed. I knew something was
different and I could articulate that. A lot of kids might not be able to
articulate what it is thatís different when non-specific or weird symptoms start
happening to them.
BC: Exactly. Thatís 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 wouldnít necessarily come to us through the referral
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 can be explained by
the stress of coping with 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 canceróthat thereís 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, itís either "all in their head" or
the patient must have a purely organic condition. Weíre learning more and more
that thereís a delicate interplay between psychological factors and physical
RM: Can you give an example? What type of
psychological factors would perpetuate a childís fatigue?
BC: One thing weíre 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 didnít measure in this
study but is something weíll look at in future studies, may play an active role
in an individualís recovery from a number of health conditions.
|"Becoming an active
problem solver would be one of the most effective approaches, even though
it doesnít mean youíre going to get better right away."
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
As a clinician, I
would think undoubtedly so. In JRA, itís 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
thing is probably what youíve 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 donít know anyone else with the same health
condition, you may feel you are the only one who suffers from it. Thatís 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 doesnít mean youíre 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 whoís not going to "fire" you for not getting betteróitís
atrocious, but it happensóthose kinds of things are going to enhance potential
recovery for most people.
RM: Letís 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 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 1Ė5 hours at a time, which is
unusual for a young adult population.
RM: So it sounds like it still impacts
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
illnessóin fact, they felt more validation from their peers than from
anybodyóbut only a few said their peers treated them differently because of the
illness. That says a lot about strong peer relationships.
RM: Iím 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: 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 worseómaybe they
avoided too much activity or avoided a lot of social involvementóthose 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 doesnít imply causation.
RM: Was this true for the young adultsí
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. Weíre finding some interesting correlational stuff, but
itís hard to control for overall disease severity and whether thatís 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
BC: Weíd like to try. Depression and anxiety may relate
to a coping style, which is whatís 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, itís hard to draw
conclusions. You look for trends so these can be followed up in larger,
RM: Are you saying an active approach to
problem solving is important for coping and might help you feel better in the
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. Thatís a big leap,
and rather circular thinking.
RM: What approach do you think would be
most helpful for kids with CFS?
BC: Weíre 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. Youíd 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 patientís intervention to each patientís
profile and their subtype.
RM: Youíve gathered a lot of interesting
data and brought up interesting questions. What questions do you want to ask
BC: Weíd really like to get better at this whole issue
of subtypes. I think if you can get to that, youíre going to find treatments
that are going to be geared to different types of presentations of CFS. Thatís
really going to be an important step. Itís going to have to be a collaborative
project where youíre 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, itís mandatory that
we look at that, too.