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Running on Empty
Words = 2,755
Sitting on an exam table, eighteen year-old Griffin Canfield crosses his hands
behind his back, slumps his shoulders, drops his head, and extends his right leg. “I’m
getting a bad headache and I’m lightheaded,” he says. He raises his head and the
symptoms fade. He drops his head again and extends his left leg, same thing: headache
and lightheadedness. Dr. Peter Rowe then tells Griffin to lie down. As he lowers his leg
and lifts his head, Griffin loses his balance and nearly tumbles off the table. His father
steadies him. Lying flat, the young man rubs his temples and covers his eyes. He’s now
sensitive to the humming lights in the exam room. Griffin’s legs twitch violently and
then he settles. Seconds later he lurches and vomits.
After handing Griffin a basin, Rowe, director of the Chronic Fatigue Clinic at the
Johns Hopkins Children’s Center, turns to Griffin’s stunned father and says, “It’s not
always this dramatic, but I see this all the time.”
Rowe dims the lights. Griffin, after vomiting and wiping his mouth with a tissue,
lies quietly, scrunched in the fetal position. He alternates between sleep and
consciousness, not lingering long in either state. The twitching of his legs, which rattle
the exam table, seems to dictate the transition. When Griffin’s legs finally settle, he lies
heavy and ragged as if he’s been tortured. In a sense he has. For Rowe’s unorthodox
physical exam has provoked an eruption of symptoms confirming that Griffin Canfield
suffers from chronic fatigue syndrome.
* * *
Some proportion of people has probably suffered with extreme, debilitating
fatigue since antiquity. The biblical Job, Charles Darwin, Florence Nightingale, and
General Douglas MacArthur may have suffered from it. Cher and Seabiscuit and
Unbroken author Laura Hillenbrand do suffer from it. As Hillenbrand, in her 2003
New Yorker essay entitled, “Sudden Illness,” wrote:
One morning, I woke up to find my limbs laden. I tried to sit up but couldn’t. I lay
in bed, listening to my apartment-mates move through their morning routines. It
was two hours before I could stand. On the walk to the bathroom, I had to drag
my shoulder along the wall to stay upright. Linc drove me to the campus
physician, who ran test after test but couldn’t find the cause of my illness. After
three weeks of being stranded in my room, I had no choice but to drop out of
college.
The term “chronic fatigue syndrome” or CFS first appeared in the scientific
literature in 1987. Prior to that, the malady carried various labels such as
“neurasthenia,” “psychiasthenia,” “general paresis,” and “yuppie flu.” In New Zealand it
was called “Tapanui flu” and in Iceland it was called “Icelandic disease.” Although
viruses and abnormalities in the immune system and misfiring brain chemicals have
been hypothesized as potential causes, what drives what has now been designated CFS is
unknown. There’s also no diagnostic test or biological indicator to identify people who
have the condition. In 1994, the International CFS Study Group, a group of physicians
and researchers intrigued by this ailment, decided that the diagnosis requires at least six
months of severe fatigue with no apparent medical explanation, and at least four
symptoms such as headache, lightheadedness, memory impairment, trouble
concentrating, muscle pain, sore throat, tender lymph nodes, unrefreshing sleep, and
post-exertional malaise lasting more than a day.
The Centers for Disease Control and Prevention estimates that about four million
adults in the United States have CFS and, though unknown, it might be as common in
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young people, particularly adolescent girls. The clinical course varies. Some people
suffer periodic bouts of disabling fatigue interspersed with relatively symptom-free
periods, while others experience symptoms of varying intensity which are unrelenting.
The prognosis is generally bleak, although some studies suggest that the potential for
improvement is greatest among those who develop CFS earlier in life.
In the young, CFS stifles activity, truncates school attendance, ruins athletic and
social aspirations, and often destroys passion and optimism for the future. Griffin
Canfield’s symptoms have cost him admission to the Naval Academy and the Marines.
If he does not improve, he may face a lifetime on medical disability.
* * *
Dr. Peter Rowe, whose work, since 2007, has been supported by funding from the
Sunshine Natural Wellbeing Foundation, a Florida-based charitable foundation, is fiftyfour years old. He is a lean, balding, gentle looking man with smiling eyes and a soft
voice. The relaxed way Rowe occupies a chair suggests that he’s accustomed to, and
comfortable with, listening to stories of mysterious maladies.
As one of a handful of pediatricians in the country who specialize in treating CFS,
Rowe spends most of his time seeing patients and their parents. He lets them unfold
their stories unimpeded even though, in many cases his experience must tell him that
they are taking the narrative in an unproductive direction. He brings to mind a director
who lets his actors improvise before leading them back to the script. To work this way,
he blocks out three hours of time for each new patient.
Rowe came to specialize in CFS almost by default. “In medical school, students
are told if patients come in with more than four or five complaints, they should assume
that those people have psychiatric or psychosomatic disease,” said Rowe. “So nobody
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wanted to see these kids, they just kind of fell to me. I’d evaluate children who didn’t
have a clear diagnosis and whose problems didn't fit into the classical subspecialties.
Two groups of these patients got me thinking.”
The first were adolescents with recurring episodes of syncope or pre-syncope
(fainting or nearly fainting). The second were kids with CFS. “What was so interesting
was that the kids who were fainting would experience a great deal of fatigue after they
fainted, while the kids with CFS would report coming close to fainting and usually felt
really light-headed. So these two groups of patients had a lot in common,” recalled
Rowe.
He discussed these patients with colleagues, particularly Hugh Calkins, a
Hopkins cardiologist, and learned about neutrally-mediated hypotension or NMH. First
recognized in the 1930s, NMH is a dramatic drop in blood pressure due to faulty
communication between the nervous and cardiovascular systems. The second or two of
lightheadedness we’ve all experienced after getting up too quickly from the couch is a
trivial version of NMH. Rowe wondered whether NMH might be responsible for the
syncope and fatigue and mild confusion that characterized the groups of unorthodox
pediatric patients he was seeing.
Cardiologists can produce syncope in their NMH patients with what is known as
the head-up tilt-table test. The patient lies flat on a motorized table for ten minutes. The
table, which has a footboard, is then titled upward to seventy degrees for forty-five
minutes. This generates precipitous declines in the patient’s heart rate and blood
pressure, which typically produces fainting, near fainting, or lightheadedness followed
by blurred vision, nausea, or vomiting.
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About fifteen years ago, Rowe decided to see what would happen if he used the
tilt-table on adolescents with CFS. All experienced big drops in blood pressure,
lightheadedness, and fatigue. Some fainted for the first time in their lives. “As the tilt
table went up, they could maintain their blood pressure for a period of time, but during
that time they became gradually more symptomatic,” said Rowe. “Then their blood
pressure tended to drop very precipitously, and at that point they had a worsening of all
of their symptoms.”
NMH is a form of orthostatic intolerance or OI, which arises when someone goes
from lying or sitting to standing. When we stand, gravity causes about fifteen percent of
our blood to drop and settle in the abdomen and legs. This pooling of blood means less
reaches the brain. For most of us this is not a problem because the body automatically
triggers a chain of reflexes that increase heart rate slightly while causing the blood
vessels to constrict, both of which force blood up to the brain. In people with OI,
however, more blood pools when they are upright and the reflexes that are supposed to
shunt blood toward the brain don’t function properly. The second form of OI Rowe sees
in adolescents with CFS is postural orthostatic tachycardia syndrome or POTS. If
someone has POTS, during the tilt-table test his or her heart will race, yet there will be a
forty-four to sixty percent decrease in the velocity of blood flow to the brain.
Rowe believes that at least ninety-five percent of adolescents with CFS have NMH
or POTS or both. Still, he’s reluctant to say OI causes CFS. “I don’t want to suggest that
the OI is the main driving force for each person even if they have an abnormal tilt test,”
said Rowe. “Treating the OI doesn’t always make a huge difference in symptoms. For
others, it seems to be the main abnormality, and they get back close to normal with
simple treatments.”
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* * *
If a routine physical exam and blood tests (to rule out other causes of fatigue such
as low Vitamin B12 levels and Lyme disease) prove unremarkable, then Rowe tests for
OI. Because health insurance companies rarely cover the cost of a tilt-table test, Rowe,
as he did with Griffin, uses neural provocation tests. These tests, developed by Drs.
Robert Elvey and David Butler in Australia, involve placing tension on the spinal cord
and on certain nerves in the arms and legs and observing what happens. Rowe lifts legs,
stretches arms, presses on feet and vertebra, flexes ankles, bends fingers and knees, and
measures range of motion using a goniometer, a plastic device that looks like cross
between a carpenter’s bevel and a compass. As he moves a patient’s limbs to produce
tension, they report the effects. In Griffin’s case, he lifted the young man’s right leg at
the hip and immediately produced muscle tension, headache, and fatigue. Rowe also
conducts coordination tests, like the ones used to assess whether a driver is intoxicated.
While seated, Griffin extends his arms out to the side, and then touches his nose, first
with the index finger of his right hand, then with his left hand. His left hand fails.
Rowe’s not surprised. “We don’t know why it is, but most kids with CFS seem to have
poor coordination on their left side,” he said. Griffin then tries to walk a straight line,
heal-to-toe. He staggers and stumbles like someone whose blood alcohol level would get
him locked up.
Rowe also usually conducts a standing test where the patient stands against a
wall, while having their heart rate and blood pressure measured once a minute for ten
minutes. Because Griffin was already so devastated by what Rowe calls “relatively trivial
maneuvers,” he didn’t bother with the standing test.
* * *
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Despite being able to make young people stumble and faint and vomit with the
neural provocation tests, Rowe says that he still cannot arouse interest among his
colleagues in neurology. But it’s not just neurology. Many physicians don’t seem to
believe that CFS exists, and the few who do don’t believe its symptoms can be provoked
in the exam room. “No one believes it. Well, most think that CFS is not legitimate.
That it’s a physical manifestation of depression,” said Dr. Sangeeta Sule, a Hopkins
pediatric rheumatologist who sometimes refers patients to Rowe. “Even the headaches
and lightheadedness that Peter can produce, a lot of people think that’s depression or
something psychosomatic. But people are glad he sees these patients because nobody
else wants to.” (Rowe seems more disappointed than angry that most of his colleagues
seem to harbor a bias against the legitimacy of CFS.)
The bias is so prevalent that advocacy groups spend most of their time trying to
reduce the stigma associated with it, even going so far as to propose different terms,
such as “myalgic encephalomyelitis,” “chronic fatigue immune dysfunction syndrome,”
or “post-viral fatigue syndrome,” terms which suggest that CFS is both real and
medically verifiable.
Although Rowe supports the work of these groups, he’s reluctant to play an
evangelical role for CFS because each time his work finds its way to the media he is
inundated with calls from desperate parents. Since he can’t possibly schedule an
appointment with them all, he chokes with guilt each time he has to tell the pleading
voice on the other side of telephone that he cannot treat their loved one.
* * *
Since December 11, 2005, Griffin Canfield has suffered an astonishing eight
concussions: three while playing hockey, two from car accidents (he wasn’t driving), one
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while snowboarding, one from a freak accident (when a bulletin board fell on his head),
and, most recently, one when he conked his head after fainting during a run on a high
school track. The fatigue and headaches and lightheadedness, as far as his father can
recall, began some time around Griffin’s third or fourth concussion (NFL players are
generally compelled to retire after four concussions).
“OI probably has lots of causes,” said Rowe. “A viral infection, changes in
hormone levels, especially for girls when they start menstruating. Some people who
suffer post-concussive syndrome also acquire OI and CFS as well. Griffin seems to be a
classic case of this.”
Griffin looks like one of those rare young men who could write his own ticket,
who could be whatever he wanted to be and do whatever he wanted to do. He’s nearly
six feet tall, has blue eyes and, at first glance, loosely resembles the actor Matt Damon.
His navy blue Ralph Lauren polo shirt and faded blue jeans strain to contain the muscle
he’s developed from working out three times a week. “When people with CFS exercise,
they feel great. The blood is flowing so the lightheadedness, fatigue, and headache
usually go away,” said Rowe. “The problem is, once they stop, they feel even worse than
they did before they started exercising. I’ve got to give Griffin a lot of credit. He’s doing
the right thing but he must feel awful right after his workouts.”
Griffin cannot drive or hold down a job. He’s been spending most of his time
preparing for the SAT exam which he’s scheduled to take the morning after his
appointment with Rowe. “I have to study the same thing over and over so I can
remember it. If I don’t keep doing the drills, I lose it,” Griffin tells Rowe when asked
how his preparation has been going.
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Rowe spends a few moments describing to Griffin’s father what OI is and how it’s
the likely cause of his son’s debilitating fatigue and headaches. “What I’d like to
prescribe are some simple things to see if we can get the headaches and fatigue to
improve,” says Rowe. “I know you’ve heard that a low-salt diet is best. But in Griffin’s
case, we need to do the opposite. I want him to eat lots of salty foods, you know, pickles
and pretzels, stuff like that. We have found that increasing salt intake helps to increase
blood pressure which can improve symptoms. I also want him to drink lots and lots of
fluid. This helps to increase blood volume and this might help get a better blood flow to
the brain. There are also medications he can take to help but I’d like to start
conservatively. Let’s see if salt and fluid help.”
Rowe also prescribes a specialized form of physical therapy to address the deficits
that were brought to light by the neural provocation tests. “If we can get the nerves to
glide more freely and increase Griffin’s range of motion it should help the nervous
system transmit the signals better so blood will get to the brain more quickly, like it’s
supposed to.”
“I can’t understand anything you guys are talking about,” Griffin says, as he
continues, even though the room is virtually dark, to shield his eyes.
Rowe doubts whether Griffin will be able to take the SATs tomorrow. “Patients
who have a reaction like this are usually bedridden for a day or two,” he says. To try to
avoid such a long recovery, Rowe decides to give an intravenous infusion of two liters of
saline to see if a dramatic increase in blood volume will help. “I’m sorry Griffin. I didn’t
know the exam would knock you out so much,” says Rowe as he leaves to find a nurse to
start the IV.
“It’s okay,” mumbles Griffin. “You’re still a good doctor.”
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