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In children, Chronic Fatigue Syndrome (CFS) -- it's also called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)-- is often incorrectly diagnosed by pediatricians and other primary care physicians, and often by specialists as well. In addition, these children's parents often misunderstand what is wrong with them. This article explains why that happens. We hope it will help parents and others to avoid these errors.
Rebecca Moore is 19 and has suffered from CFS for more than four years and neurally mediated hypotension (a related problem) since she was 13 or younger. She was not correctly diagnosed with CFS, however, until she had been seriously ill for a year and a half. Only recently she was told by a cardiologist that her symptoms during early adolescence were characteristic of Neurally Mediated Hypotension. Rebecca is now on the board of the CFIDS Association of American and chairs its Youth Advisory Committee (YAC). She is the editor of Youth Allied by CFIDS, the YAC newsletter.
Frank Albrecht's daughter, now 13, has neurally mediated hypotension and symptoms of CFS. Her symptoms began when she was 11, but she was not correctly diagnosed until a month before she turned 13. Frank has a doctorate in psychology from Johns Hopkins and prac tices mental health counseling with both adults and teenagers.
Suppose you're a mother who enjoys normal good health and your female adolescent says to you: "Mom, I'm awful tired all the time. And my bones hurt, or something. And I feel like I can't think straight anymore. I feel weird."
What might you think?
Frank has to confess one of his sins here. Before he knew anything about CFS, a mother came into to his office to tell him she was herself "chronically depressed" and now her 13 year old daughter was getting depressed too. Mother had given up on treatment; nothing seemed to help. But she wanted help for her daughter. This girl said she was tired all the time, often didn't feel well enough to go to school, that her mind wandered in school and she couldn't seem to remember things as well as she used to. She also had aches and pains, always seemed to have a sore throat -- she was miserable! She was easily angered, too, because her mother was on her case so often about her laziness, her forgetfulness, and her school avoidance.
Frank accepted that this girl was depressed, as her mother thought, and treated her. She improved a little. She tried harder. She more often went to school when she felt bad. Her mother lightened up on her some, which helped more than anything. Frank felt the treatment was a faint success though certainly far less than he'd hoped for.
Two years later the mother phoned him. By this time, he knew about CFS -- and so did she. "I think I have Chronic Fatigue Syndrome," she told him, and asked him for a referral to a physician. And Frank suddenly realized, of course she has Chronic Fatigue Syndrome! And not only that, her daughter did too!! Mother was stunned by this information -- though she'd figured out her own problem, it still hadn't occurred to her that her daughter had it too!
That's how easy pediatric CFIDS is to miss.
Children and adolescents with CFIDS (especially those with a gradual onset) may be seen as unintelligent, lazy, shy or social ly awkward, uncooperative, unmotivated, and so forth. As their illness progresses, teachers and parents may believe that they are simply moody, maladjusted, misbehaving, or slow-learning adolescents, because it is more difficult to recognize the neuro logical/cognitive problems that they've adapted to.
Pediatric CFS often frustrates physicians because kids' complaints tend not to be consistent. One month it's sore throat, headache, and dizziness that are most disabling. The next month it's another 3 symptoms that are the most significant. Children may not have all the "right" symptoms at the right time to be diagnosed. The variation in symptoms and in symptom intensity, combined with the relapsing/remitting course of the illness, may not be consistent with what most pediatricians think CFS is.
The kids themselves often decide that their symptoms are either normal and that they shouldn't complain, or that they are so strange that they should hide them. They may feel guilty for noticing their symptoms, or even for having them! So they say nothing, leaving their parents suspects that something is wrong, but not knowing what. If an adult living with one of these children is asked if anyone in the household has X, Y, or Z symptoms, they may say "No" simply because the symptoms are not yet so unbearable that the child has been forced to mention them.
There are also some very objective factors that prevent physicians from recognizing CFS in pediatric patients.
Adults, including physicians, often don't take children's complaints very seriously. Children, for their part, do not have the kind of autonomy and assertiveness that it takes to stand up to adults who do not believe them. It's hard enough for adults to do that with each other!
Most children, in fact, believe that what adults tell them must be true. If they are told they are not sick, that's what they will believe.
In fact, many children whose CFIDS started gradually do not believe they are sick. These kids will deny that anything illness-related is wrong until they are diagnosed -- and sometimes even then!!
If a child becomes increasingly ill, she may recognize in retrospect that her problems were caused by illness -- yet still in her heart think of herself as having been shy or unintelligent. Children tend to see their symptoms as being signs of poor social skills because at age 12 or 13, one is both self-absorbed and interested in relating to one's peers. Being different isn't acceptable. So if friends don't appear to have the same fatigue or pain, then they must either be covering it very well, or not have the symptoms at all. Either way, they are "better" or "more cool" than someone who shows herself as sick.
Another problem is that a lot of kids with CFS have one or more parents or relatives that have a similar illness. This makes what's wrong with them seem normal. For instance, one symptom of neurally medicated hypotension is needing to lie down and rest for a long time after taking a hot shower. Dr. Peter Rowe relates that in the family of one of his patients every female for generations has always had to lie down to rest after a shower! They all had the illness so none of them thought this behavior was odd.
Once a wrong diagnosis gets fixed on a kid, it's hard to change. Many CFS kids, for instance, are diagnosed with school phobia or school avoidance. Others are, like Frank's patients, treated for depression, or for other emotional/behavioral disorders. If the illness gets worse, it's simply assumed that the child is resisting the treatment, won't really engage with her counseling, and so forth.
Another factor is social class and social self-confidence. Dr. David Bell has said that it may take a lot of self-confidence for even an adult to obtain a diagnosis of CFIDS. Typically, the first doctor you see about this disorder says it's all in the mind, or is an exaggeration, or will go away in time. If the patient persists in returning to the doctor to say that something is wrong, the physician often becomes irritable and dismissive. To persist in the face of such rejection is difficult! Those who do it are usually above average in intelligence, income, and self-confidence.
Most children are taught to respect physicians and not to disagree with them. Many are afraid of doctors. Children with CFS are often told by their pediatricians, in a kindly and advice-giving way, that there is nothing much wrong with them, or they are exaggerating, or they should try harder, or they are trying to avoid their responsibilities. These children usually feel that they cannot tell the doctor that they disagree with him: they fear he will be annoyed and not like them anymore -- and not want to help them anymore, either. Such children often try to get well through a mystical feat of the mind. And they often lie to the doctor, telling him what he wants to hear in order to avoid his disapproval.
Uneducated and poor people rarely are able to stand up to a doctor or ask for another opinion. They are intimidated by the doctor's knowledge and social prestige. They are unsure of their own perceptions, and feel guilty when the doctor is annoyed with them. Even when they feel strongly that the doctor is wrong, they typically say and do nothing about it -- because they don't know how. It takes not only self-confidence, but a lot of social skill to deal with skeptical professionals and uncooperative insurance companies, and this is frequently lacking.
In summary, CFS in children is often overlooked because
1. Parents aren't familiar with it or looking for it in their children.
2. The early symptoms often lead to an incorrect diagnosis of emotional or adjustment problems, which forecloses looking further for explanations.
3. Children often misinterpret their symptoms, seeing them as inappropriate, shameful, or signs of inferiority. This leads them to hide their symptoms from friends, family, and physicians.
4. The gradual onset of the disease, which is more frequent in children than in adults, may lead the child and the significant adults in her life to think that her low functional level is normal for her.
5. Pediatric CFS, in its early months or years, often does not meet the formal CDC criteria for CFS. Hence the physician rejects this possibility at the onset, and does not wish later to revisit that issue.
6. Many pediatricians and family practice physicians were taught in medical school that the confusing pattern of symptoms typically seen in pediatric CFS is an indication of neurasthenia, a "neurotic" condition.
7. Children have a hard time telling adults what is wrong with them, especially if the adult is skeptical.
8. Many parents are intimidated by doctors and cannot assert themselves if they feel a wrong diagnosis has been given. They frequently lack the time, money, and social skill it takes to negotiate the maze of specialists and insurance company referrals it often takes to reach the large medical centers where most pediatric CFS diagnoses are made.
Given all this,
it's amazing that any children at all are diagnosed with this condition!
At this time, nobody knows how many such children exist -- either diagnosed
or overlooked. But there are a lot of them, and we hope this problem will
receive more attention in the future.