This ME/CFS patient case history is excerpted from Dr. Bell’s book Faces of CFS - Case Histories of Chronic Fatigue Syndrome, published in August, 2000 (downloadable free at www.davidsbell.com). Each case illustrates a different aspect of the illness that he has studied since the ‘Lyndonville Outbreak’ of 1985-1987. And the detective work continues. On May 20, Dr. Bell will present a 25-year research follow-up on Lyndonville patients at the Invest in ME International Conference in London.
A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie… because everything about Arnie was typical of CFS - a disease his doctor did not believe existed.
Karl Friedrich Hieronymus Baron von Munchausen was a German “soldier, adventurer, and a teller of tales,” according to one description, who lived from 1720 to 1797. His fantastic lies about his daring and conquests were so notorious that their memory survives to this day as German lore.
Medical science has borrowed from this ancient character’s name to categorize the patient who engages in equivalently tall tales, all having to do with physical illness. When a parent or caretaker makes up bizarre tales concerning the health of their child, doctors call it Munchausen’s syndrome by proxy.
Sometimes the parent intentionally harms their child, by poisoning for example, to create the symptoms. Experts suggest the parent is motivated by a need for attention, and get it they eventually do, one way or another.
Although it was the Baron who proved himself capable of such outrageous falsehoods, women are more vulnerable than men to being suspected as having Munchausen’s syndrome. And women are suspected of Munchausen's syndrome by proxy when doctors are unable to find a simple answer to a child's ills.
This is because women typically take the dominant role in helping children through the maze of doctor's visits, hospitalizations, and treatments when children fall chronically ill.
Every year, parents in this country and abroad face court hearings before judges and juries in which they are subsequently found guilty or innocent of intentionally harming their child due to Munchausen's syndrome by proxy.
Depending on the circumstances, the prosecutor, representing the state, may add fraud to the charges. Usually, the mother’s psychological competence becomes an issue of enormous significance in such a trial. If a child has been judged to have Munchausen’s syndrome by proxy by a psychiatrist serving as the state’s expert witness, the mother may face the removal of her child from her household, usually into foster care, as well as criminal charges.
The notion of a mother deliberately hurting her child is difficult for most of us to comprehend. Nevertheless, for some years now, Munchausen's syndrome by proxy has been accepted by the medical profession as bona fide, if somewhat baffling. And there is no question that it occurs. Hidden videotapes in hospital rooms show parents either injuring their children, or doing things that make it appear that a child is ill. What a world....
But, because this does occur, physicians have grown suspicious, particularly when confused by symptoms in the patient they treat.
With this in mind, imagine what might happen when a mother whose child suffers from an extremely complex, misunderstood - even overlooked - chronic disease, becomes an outspoken advocate for that child, struggling to explain her son’s illness to unsympathetic doctors and suspicious school officials.
Imagine the situation from the perspective of the sick child, who can barely articulate to his friends, much less to an attorney or a psychiatrist, what ails him. Imagine how, over time, these quiet struggles can escalate, thrusting mother and child into a firestorm of accusations by authorities of all stripes, as they attempt to salvage their dignity and even their right to remain a family.
A chronic disease robs children of many things, but it should never destroy the life-affirming refuge children find in their home, as it did with a boy named Arnie.
Arnie was ten when he experienced the onset of CFS, but for much of his brief life he had suffered a seemingly endless succession of colds, allergies, sore throats, stomach aches, and headaches.
The doctors his parents took him to see somehow failed to notice a pattern of minor infections that, in retrospect, strongly suggested Arnie may have had a medical problem for some time before the symptoms suddenly escalated.
Instead it was attributed to an over-anxious parent worried about trivial illnesses. In July, 1990, Arnie’s heightened level of exhaustion, hitting him hard after an intestinal flu, heralded the onset of full-blown CFS.
By the time school began that September, Arnie was too weak to stand and was confined to bed. His mother took him to see a pediatrician numerous times, but the doctor was unable to explain Arnie’s profound fatigue.
Months passed, a period during which Arnie failed to receive either a diagnosis, or an education. By law, school systems are required to provide home tutoring to students who are too sick to come to school, but school systems also require that the child carry a diagnosis before they hire a private tutor using state dollars. Arnie had no diagnosis.
The school year ended, and another began.
Arnie was still house-bound because of the exhaustion. In every respect, he was absolutely typical of a child with CFS.
• He suffered from sore throats, headaches, sensitivity to light and blurred vision, pain in his muscles, joints, and lymph nodes.
• His ability to learn was diminished because of difficulties with memory and attention.
• He could not remember what he had read.
• His attempts to exert himself physically uniformly resulted in relapse, or worsening of his fatigue.
Eventually, doctors ruled out thyroid disease, lupus, multiple sclerosis, rheumatoid arthritis, HIV disease and hepatitis.
Some of these doctors did find immune abnormalities that suggested that Arnie was suffering from an on-going viral infection.
But the doctors believed that the abnormalities failed to fit a pattern associated with any particular disease – at least, any disease with which they happened to be familiar.
• Neurological tests revealed that Arnie suffered from vertigo and lacked the kind of fine motor control in his hands that might be expected of a boy his age.
• Other tests of intellectual capability demonstrated that Arnie’s short term memory and concentration skills were impaired.
All in all, everything about Arnie - his long history of illness, his physical exam, his laboratory tests - were typical of CFS, a disease his doctor did not believe existed.
It was just eight months after Arnie had become severely ill, however, that his parents began arguing about whether or not he was really sick.
Arnie’s father sided with the child’s pediatrician and other specialists, who had suggested that there was nothing medically wrong with the boy. Arnie’s father was particularly tired of paying for medical exams that failed to provide definitive answers. He believed his son needed psychiatric care.
Arnie’s mother felt differently. She did not believe the doctors. Instead, she began to explore unconventional treatments for her son, embracing, for a time, the “fringe” medicine offered by “ecologists,” naturopaths, and acupuncturists, each of whom seemed confident they understood Arnie’s problems, yet each of whom had a different explanation for them.
Arnie’s father thought these alternative healers were a bunch of loonies.
In time, the boy found himself at the hub of an escalating battle between his parents.
Large conflicts and petty complaints that had smoldered for years between the two adults erupted in a war centered on their son. Naturally, the boy tried hard to feel better in order to bring an end to the war. When his illness continued, in spite of his best efforts, he became withdrawn. And when Arnie’s father moved out of the house, Arnie assumed he had caused the break up.
A child sees the world from a simplistic, egocentric point of view. By the age of ten, children are better able to assess the relationship between cause and effect than they were at five, but the tendency to believe in a magical connection between one’s own actions and unrelated events has yet to vanish entirely at Arnie’s age.
Arnie’s parents made a mistake, too. They were unable to separate their private conflicts from their son’s illness, leaving him caught in the crossfire. What followed was probably inevitable: a kind of chain reaction in which a sick child became a battleground, fought over not only by his parents, but by the local school system, and, eventually, the state of New York.
As far as Arnie’s pediatrician and his teachers were concerned, the issues were clear.
Arnie seemed to be incapacitated with a slew of mysterious symptoms, just as his parents were in the process of divorce. These authorities believed Arnie was suffering a kind of psychiatric meltdown because of his parents’ acrimony.
According to the law of the land, if parents are causing a child’s illness - whether psychiatric or medical - then the parents are guilty of child abuse. In such cases, the law decrees that the appropriate social institutions intervene on behalf of the child, even removing the child from the destructive environment if necessary. In Arnie’s case, the vultures were beginning to swarm.
The principal of his school made several visits to the boy’s house during the first year he was absent, acutely aware that neither his parents nor his doctors had been able to offer the school a diagnosis. Each time she visited, Arnie was in the living room, seated, and watching television. He did not look sick to her.
The principal assigned a truant officer to the case.
The officer saw Arnie in his back yard one spring day, resting in a lawn chair, sipping lemonade. Finally, the school filed a truancy petition with the local court in order to force Arnie to return to classes. In addition, the local social services department launched an investigation of Arnie’s parents to determine if they were guilty of child abuse.
At the court hearing on the matter of truancy, the judge listened to the attorney representing the school argue that Arnie had been absent without good cause.
Arnie’s mother, representing herself, told the judge about her son’s medical condition. She called it chronic fatigue syndrome. She also described the holistic-style therapy of vitamins and herbs and acupuncture she had embarked upon to cure her son.
In turn, the impassive judge inquired about the impending divorce, as well as the custody hearing. Arnie’s parents had begun arguing about which one of them would raise their son after the divorce.
Not surprisingly, the judge, who knew of CFS only as the rather flaky sounding “yuppie flu,” concluded the hearing by ordering a psychiatric evaluation of Arnie. He also ordered Arnie to return to school.
The next day, two things happened, both of which ended in disaster: Arnie went to school, and his mother hired an expensive attorney.
At school, Arnie found to his dismay that his old friends greeted him with poorly concealed contempt. They had heard the rumors: Arnie was faking it. On the second day, the gym teacher decided that Arnie could benefit from exercise; the teacher believed exercise would shake the boy out of his long “slump.”
On the morning of the third day of this new regime, Arnie discovered he was once again too weak to get out of bed.
In the meantime, the lawyer hired by his mother had obtained Arnie’s medical records and had read them closely, paying special attention to the variety of opinions from specialists suggesting Arnie’s problem was psychosomatic.
The attorney made a unilateral decision: Assuming the doctors were correct that family turmoil had caused Arnie’s psychiatric problem, she decided to put her energy into helping Arnie’s parents obtain their divorce.
At the court-ordered psychiatric evaluation, the doctor began by interviewing Arnie and his mother together. Arnie was dizzy, exhausted, and found it difficult to concentrate on the psychiatrist’s questions. His mother recognized her son’s distress, and consequently did most of the talking in order to help conserve his limited energy. Afterward, the psychiatrist asked to talk to Arnie without his mother present.
The exhausted child was slumped in his chair. It was flagrantly apparent to Arnie that the psychiatrist had believed very little his mother said, and, after her departure from the room, he became even more withdrawn, even hostile. He responded to the doctor’s queries in monosyllables. Finally, the psychiatrist talked to Arnie’s mother privately.
The woman tried to “explain” chronic fatigue syndrome to the psychiatrist, who eyed her warily.
Struggling to suppress her own feelings of despair, she spoke as enthusiastically as possible about the alternative medical treatments she was continuing to explore. She wanted the doctor to know just how hard she was trying to help her son get well. The psychiatrist concluded the interview eventually, leaving Arnie’s mother feeling uneasy.
Afterward, the doctor called her husband, who took the opportunity to tell the psychiatrist that his boy was fine. His wife was the sick one, he added.
A week later, the psychiatrist submitted his report to the court. At the end of a lengthy discussion, he unveiled his diagnosis: Munchausen’s syndrome by proxy.
Arnie 'looked well', the doctor had argued in his report.
In addition, Arnie was clearly depressed. He pointed out, too, that neither the boy’s father nor the boy’s doctors believed Arnie was medically ill, and that the child was at the center of a custody battle between divorcing parents. More critically, the psychiatrist noted, there existed an unusual degree of “enmeshment” between mother and son; Arnie’s mother had acted as his spokesperson during their interview.
Further, she had appeared enthusiastic, even cheerful. Clearly, she had created an environment of oppressive neediness that had driven Arnie to feign illness, and her subsequent “over-involvement” with her child’s illness stemmed from this deviant desire to be needed.
The judge ordered that Arnie be removed from his mother’s custody and placed in a foster home.
He ruled that the final determination of Arnie’s fate would be decided in the custody hearing. He also demanded, for a second time, that Arnie return to school and receive twice-weekly psychiatric counseling. In a small concession to the boy’s claim of illness, the judge ruled that Arnie could be excused from gym class.
One week later, Arnie swallowed a handful of aspirin and several sleeping pills he discovered in his foster mother’s medicine chest. He was admitted to a psychiatric hospital immediately afterward. Though it had never been Arnie’s specific intent, his suicide attempt had confirmed beyond all doubt the diagnosis of the court’s psychiatrist, school officials, and the judge who had presided over his truancy hearing: He suffered from a serious psychiatric illness.
Arnie’s incarceration and resulting isolation would have been considerably less had he robbed the corner grocery store.
• The psychiatric hospital administrators forbade his mother to visit him; after all, she had fostered the imaginary illness in her son, then encouraged his belief in it.
• Hospital doctors ordered him to submit to counseling sessions, sessions during which he found it hard to avoid confessing his depression. Such confessions only served to strengthen the prevailing view that his bizarre “illness” was psychiatric in origin.
• Arnie was given large daily doses of tricyclic antidepressant medications, a class of drugs that often increase fatigue in CFS sufferers. When Arnie complained that the drugs made him feel worse, staff at the hospital simply ignored the complaints.
• They further demanded that he participate in all the ward activities. Arnie followed the path of least resistance, dragging himself from project to project without comment, but he felt as if he was dying a slow death.
In short, Arnie was snared in a trap worthy of Franz Kafka’s imagination.
He would remain incarcerated and drugged until he was successfully rehabilitated, which chiefly meant renouncing his absurd belief that he was sick.
Doctors like to solve problems. They like to make people well. Nothing makes them happier. Sadly, when they fail, their universal fallback position amounts to blaming the patient for his or her own disease. Even when the evidence points in the opposite direction, doctors frequently come up with psychological diagnoses in the absence of clear answers.
Children may be the most vulnerable of all to such treatment. It’s hard for them to fight for their rights, or make the case for their own sanity. Pediatricians, when flummoxed by their small patients’ complaints, tend to cast a suspicious eye at the child’s home environment: If the parents are in distress, pediatricians are provided with a convenient explanation for mysterious symptoms in the child.
As a pediatrician, I recognize the legitimacy of including the status of a child’s home life in my differential diagnosis - the decision tree I work from as I search for the correct diagnosis. But I do not automatically exclude the possibility of medical illness in a child because his parents are on the verge of a divorce, or if a grandmother died.
Just as it is possible to have child with diabetes living within a family in turmoil, it is possible to have a child with CFS living within a family in turmoil. Family dysfunction has its own signature; it creates its own particular pattern of difficulties in children, and these problems are very different from the problems of CFS.
Demanding that a diagnosis of CFS may be made only in perfect families makes no sense at all.
In truth, family problems are common, and with the additional stress of a chronic illness in a family member, families can even fall apart. In my view, psychological diagnoses need to be made with the same specificity and accuracy as medical diagnoses. It is not enough to pull a psychological diagnosis out of your hat if you are stumped. It is necessary to be a good doctor. Of course, the attribution of the psyche to the cause of physical illness is hardly a new phenomenon, especially in children.
Autism is a severe neurologic disease of childhood, but for many years doctors ascribed autism to family dysfunction.
We now understand that autism has nothing to do with poor parenting; it is an organic disease.
Like medicine, psychiatry has a spotty history. Perhaps the most classic example of psychiatric miscalculation was the belief, in earlier centuries, that “shock,” - the dire condition we recognize today as the result of a dramatic loss of blood - was due to a “shock” to the emotions. Early psychiatric literature stated that the thready pulse, pale face, clammy hands, and drop in blood pressure - classic shock symptoms - are the result of an emotional shock, likely a reaction to the shock of the sight of blood.
During the American civil war, however, a doctor noted that this emotional condition called “shock” was quickly followed by death among soldiers who were mortally wounded on the battlefield. He reasoned and later proved that shock was a physiologic abnormality caused by blood loss. Imagine telling someone who has just been shot in the chest to snap out of their blues and pull themselves together.
I am not going to debate the legitimacy of Munchausen’s syndrome by proxy. It exists, a sad commentary on modern society. But the diagnosis of Munchausen’s is made by obtaining absolute proof of a parent inflicting conscious and active harm on their child. Frequently, hospital administrators who suspect a parent of Munchausen’s will install a videotape in the room of the young patient in order to acquire irrefutable evidence of a parent committing such harm.
In Arnie’s case, neither the court nor school officials bothered to offer proof of his mother’s intent to cause harm, or even actual harm, no doubt because they had no proof.
Their actions were based on conjecture.
Even putting aside medical arguments, common sense tells us that Arnie's the activity limitation is not due to suggestions from his mother. Adolescents are known for being rebellious and not doing what their parents tell them to do. Sometimes I have a hard time getting my son to clean his room. How could a parent tell a child to be tired all the time and stay sitting in a chair?
Fatigue caused by Munchausen’s syndrome by proxy is a legitimate diagnosis only if the parent is secretly feeding their children barbiturates or poison, and this can be easily tested.
In my view, the mother’s so-called “enmeshment” in her son’s illness was an attempt to protect her child from the authorities in the school system, the legal system, and the medical establishment, who understood absolutely nothing about the disease from which he suffered. I believe she should have been guilty of child abuse if she had been indifferent to her son’s suffering.
It would be wonderful if I could report here that Arnie’s story is a singular one. Unfortunately, these events are becoming increasingly common as more and more children and adolescents fall ill with CFS.
The medical establishment and our federal health agencies are digging in their heels, so to speak, hewing with vigor to the mistaken belief that CFS is psychiatric in origin. As a result, more and more children who suffer from CFS are being diagnosed with Munchausen’s syndrome by proxy, and the courts are remanding them to foster homes.
Arnie’s attempted suicide attempt, under such conditions, is hardly uncommon, either. Too often, children with CFS who have been taken from their homes, told they are imagining their illness, and sent to live in strange homes with adults who refuse to acknowledge their symptoms and disability, find death to be a better option.
Like Arnie, these sick children frequently end up in psychiatric institutions, deprived of the comfort of the parent, or parents, who may be the only people who understand they are ill.
Failure to diagnose an illness is, in some circumstances, malpractice. Failure to properly diagnose Arnie resulted in a forced separation from his mother - his only advocate - and his subsequent suicide attempt and incarceration. For Arnie, failure to diagnose had serious consequences.
The existence of CFS has been confirmed by the National Institutes of Health and the Centers for Disease Control. There continues to be legitimate debate as to what causes the illness, but to deny its existence because of a collective failure to understand its cause is inexcusable.
The American Academy of Pediatrics has stated that at least one part of its mission is to act as advocates for children. On the contentious matter of CFS, which afflicts thousands of children and adolescents, however, the Academy has remained silent. I believe the Academy’s silence is equivalent to child abuse. Our court systems have an obligation to protect the young and the helpless. Our courts, however, take their advice from the medical profession.
There are many forms of child abuse: neglect, physical abuse, sexual abuse... I would like to suggest that the term "medical abuse" be used when children are directly hurt by apathy or ignorance of health care providers.
Not the ignorance expected prior to scientific discovery, but ignorance defined as refusal of accepted fact. We are not talking about a new religion here, CFS has been recognized and studied in this country for nearly 20 years [now 30].
In the villages of ancient Europe, citizens believed that hitching four widows to a plow and forcing them to labor through the night would ward off epidemics of plague and influenza. Some day, the current apathy, perhaps more accurately, the silence, that veils the existence of CFS, will be considered medical barbarism on a grand scale, and just as ridiculous as hitching widows to a plow.
Arnie is 19 years old now, and remains disabled by CFS.
His incarceration in the psychiatric institution lasted six months, after which he lived in foster care for another several years. He has reunited with his mother, and is at last receiving basic symptomatic care for his illness.
- Dr. David S Bell, MD, Lyndonville, New York, August 15, 2000
* This article is excerpted with kind permission from Dr. Bell’s classic book Faces of CFS - Case Histories of Chronic Fatigue Syndrome; © David S Bell, MD, 2000. It may be downloaded as a free eBook at Dr. Bell’s website www.davidsbell.com/DSBFaces.htm