Army's New Tack on Unseen EnemyBy David Brown
Washington Post Staff Writer
Monday, November 23, 1998; Page A01First of two articles
The man in the lab coat draws a wavy line on the blackboard. It could be depicting any number of things that go up and down. Tides, perhaps, or pistons, or the populations of bugs. This wave, however, depicts the course of a chronic illness. The teacher wants to know what it's like to ride it, month after month.
"What do you do when you're at one of these places?" he asks, pointing to a trough.
"I don't want to see my wife and kids," says one of his listeners.
"You want it to go away," says another.
"It affects your work performance," says a third.
The teacher points to a peak on the curve. What about when you're here?
"That's the day you say, 'Okay, sweetheart, let's take the kids, let's go out to the park,' " says the first man. "It's like someone gives you a jackpot."
The teacher returns to the line.
"What we're going to try to do is flatten these curves out. It's probably not realistic to get rid of the ups and downs completely."
His last statement is neither promise nor prediction, but only a hope. It will take work, luck, and most of the next month, to seem like a reasonable one.
The exchange occurred earlier this year on Ward 64 of Walter Reed Army Medical Center. The listeners were four men and one woman with "Gulf War Syndrome." The teacher was Lt. Col. Charles C. Engel Jr., a career Army physician. They had come together for three weeks of physical therapy, classroom lectures, group discussion, consumer education, and practical instruction on how to make the most of a bad thing.
Since the end of the Persian Gulf War more than seven years ago, a large number of veterans have reported they are chronically ill. Many believe the war is to blame. Some have gotten little relief from their pain, despite intensive medical care. In the last two years, about 185 have ended up on Ward 64.
"A lot of the people who come here have been beating down doors for seven years trying to get someone to acknowledge the reality of their symptoms," says Engel, who directs the "Specialized Care Program" at Walter Reed. "We tell them: 'You don't have to beat down this door. It's open.' We tell them: 'There is a Gulf War Syndrome. And you have it.' "
The doctor's assertion of Gulf War Syndrome's reality is a breath of fresh air for many veterans. But his statement is misleading in one sense. "Gulf War Syndrome" is more a term of art than a formal description of a disease.
The condition is commonly thought to include some combination of the following symptoms: fatigue, muscle or joint pains, gastrointestinal complaints, skin rashes, poor sleep, memory problems and difficulties concentrating. It differs from true medical syndromes in important ways, however.
People with it share little more than participation in the Gulf War (and, in a few cases, not even that). They suffered no unique exposures, their illness has no cardinal feature, and their symptoms follow no predictable course.
Gulf War Syndrome bears some resemblance to a few other chronic illnesses, notably chronic fatigue syndrome (CFS), multiple chemical sensitivity (MCA) and fibromyalgia. The lack of "objective" explanation for these diseases leads many doctors to reject a patient's disability as spurious, or dismiss symptoms as psychological. Consequently, sufferers often consult many practitioners, accumulating tests, diagnoses and pills, as well as frustration, anger and, occasionally, hopelessness.
By the time a Gulf War veteran gets to the Specialized Care Program, he or she has (on average) visited the doctor 17 times, undergone 62 tests and filled 13 prescriptions. The average patient complains of 10 symptoms and carries six diagnoses. Most are tired of looking for answers but cannot bring themselves to give up the search.
When they get to Ward 64, however, things change quickly.
The doctors, nurses and therapists there aren't looking for answers. Actually, they aren't even interested in them. When it comes to Gulf War Syndrome, they have given up on tests, theories and diagnoses, and they urge their patients to do the same. In that first act of surrender, they believe, may lie the secret to living with it.
Mapping the Strategy
The corner conference room on Ward 64 is airy and bright. With windows along two walls, it looks south and west over the cluttered rooflines of the Walter Reed campus. Around a large wooden table are the five members of Class No. 28. Backpacks are thrown on empty chairs, and the favored attire is sweat pants, Nike sneakers and No Fear baseball caps.
Today's lecture: "The Biomedical Model."
Engel proposes to dissect the visit to the doctor -- what it looks like and feels like, what the doctor assumes and the patient expects. This is a topic his students are experts on.
Marking pen uncapped, he asks a question. Out of 100 people who go to a general medicine clinic, what percentage ultimately get a clear-cut diagnosis for their main complaint?
There's a murmuring of numbers. Seventy-five percent, someone says. Eighty percent.
"Five percent," says Staff Sgt. Anibal Cruz Jr., who is an Army recruiter in Brooklyn, N.Y. He suspects it's a trick question and barely waits for Engel to give the answer (about 25 percent) before launching into his own analysis. The success rate depends on who's complaining and who's diagnosing. Cruz gives an example, starting out using the third person but quickly sliding into the first.
"The GMO [general medical officer] sees the person, examines him, takes an X-ray and says, 'There's nothing wrong, here take these Motrins.' I was on Motrin, Flexeril, Soma, Naprosyn -- I was taking every kind of muscle relaxants there were. What I don't get is, if there's really nothing wrong," he says, arms outstretched and palms up, "then you gave me a bag of pills for something that wasn't there."
But of course there is something wrong.
At age 31, Cruz has a painful shoulder that has kept him from fulfilling his physical training requirement for several years. He has back, hip, knee and ankle pain that makes even running uncomfortable. He feels chronically stiff and out-of-shape. And that's not the half of it.
After the war, he began having sleeping problems. Ultimately, he was diagnosed with obstructive sleep apnea, a disorder in which a person periodically stops breathing during sleep. Now when he goes to bed, he puts on a cumbersome mask that forces air into his nose and mouth under pressure, and sleeps better.
In recent years, he also has had surgery for chronic sinusitis, and developed allergies. For these problems he uses four different inhalers, and takes a pill every day.
How did this all happen? He isn't sure, but he has an idea.
In the gulf, he served in a military police unit. Among his many tasks was hosing down combat vehicles that had been brought back from the front. He believes there may have been something in the rivers of dirty water that poured off them that caused at least some of his symptoms.
Cruz began his account sitting at the table, but now he's so worked up he's standing and gesturing theatrically.
"So maybe it was all in my head. But then I saw the social worker, the psychologist, the psychiatrist. And they all said I was okay in the head. But I'm thinking, maybe they're wrong. I mean, all I really want is to get back to what I was doing before. Get back to the way things were. I don't want to just lie around the house."
Engel wants to continue with his lecture. But this group, unlike many, is up, running and ready to talk. Telling them to sit down, shut up and listen is, well, part of what's caused them so much misery. So he modifies the lesson plan. He asks them what it was like when they suddenly found themselves with a chronic illness.
Staff Sgt. Teromee White, who is 38 and served in a quartermaster unit in the gulf, jumps in. Like Cruz, he's a New Yorker -- loud, expressive and used to talking to strangers.
"I was healthy. I never went to a doctor or nothing. When I was 30, I could hurt myself and boom! -- I'd get better." Soon, he's standing and shouting, his voice raspy with disbelief. "Nothing like this happened before. I could do anything. So why's this happening now?"
White, too, was diagnosed with sleep apnea and chronic sinusitis. He has joint pains, headaches and, like Cruz, a theory. In the gulf, he fell off a truck and injured his left shoulder and wrist. The wrist healed, but the shoulder still hurts. Years later, he recalled he had gotten an anthrax vaccination in that arm. He has met a half-dozen people, he says, who still hurt in the arm where they got the shot.
Steven Coy, a 39-year-old civilian who went to the gulf as a mechanic, isn't at the table, but off by himself in a chair pushed against the wall. He's been assiduously writing notes in a ring binder. But he stops to answer Engel's question.
"Okay, you have a headache, right? You take an aspirin and it goes away and you know why you got it. Maybe you didn't sleep, didn't eat that day, something. So you say, I won't do that again. With this, you don't have to do anything and you get it. And you can't take anything to make it go away."
Like most accounts of Gulf War Syndrome, the essential element of these is mystery. Symptoms mysteriously appear, and then mysteriously resist treatment.
The diversion in the conversation turns out to be useful, for it allows Engel to get back on track and talk about what people expect from medicine, and what they think is necessary to get better.
The issue of expectations is crucial. For the Specialized Care Program to do any good, Engel believes, the patients must give up the idea that they must first solve the mystery of Gulf War Syndrome before getting on with their own recovery. They also have to loosen the bonds between illness and impairment. Most people, he says, assume you cannot possibly address an impairment without first identifying the illness that's causing it. But is that so?
Engel asks the group to think of things -- other than the disease itself -- that go into determining how a sick person fares. The group offers a few ideas, but the teacher has to supply most himself. On the board he writes: "other medical illnesses," "motivation and attitude," "fitness," "family support," "education," "alternative approaches," "primary care doctor".
His point is that even if a person's diagnosis is unknown, there's a lot of variables -- some under the person's control -- that determine the final outcome.
"Rather than focus only on the illness and seeing what we can do about it," he says as the session ends, "let's see what we can do to alter the impairment."
Exploring the Perimeter
A career military physician and a Gulf War veteran himself, Charles Engel never expected to be in this line of work.
He grew up in Seattle, where his parents ran a family grocery, and went through medical school on an Army scholarship. He planned to become a family practitioner but switched to psychiatry because it seemed a better route to get to know patients. Ultimately, he found he was far more interest in people's physical complaints than the average shrink, and embarked on an exploration of the boundary world between mind and body. A surprising amount of modern America's health problems reside there, and Gulf War Syndrome may also.
There's a common assumption that Gulf War Syndrome is an unprecedented event -- a puzzle that research will one day figure out, freeing its sufferers at last. Engel personally doubts this is the case.
While admitting that much remains to be learned about threats to health that soldiers faced in the gulf, he thinks there's evidence that Gulf War Syndrome has more ordinary roots. It may simply look unusual because it's been subjected to the bright light of public attention.
The problem of chronic, poorly explained symptoms -- which, in a word, is the problem of Gulf War Syndrome -- is a huge one in medicine. In this age of high-tech miracle cures, it may be the profession's best-kept dirty little secret.
In a study published in 1994, researchers recorded the frequency with which doctors couldn't come up with causes of 15 common symptoms reported by patients. Fainting was unexplained 33 percent of the time, headache 30 percent, dizziness 27 percent, abdominal pain 23 percent, breathlessness 19 percent, joint pain 17 percent. Other studies have found even higher rates.
Various surveys have found that every month, about 90 percent of people experience at least one problem from a list that includes (among other things) fatigue, stiffness, rash and diarrhea.
In a study published this summer in the Journal of the American Medical Association, researchers asked 3,600 soldiers (some Gulf War veterans and some not) whether they suffered from any of 35 physical problems listed on a questionnaire. Ninety-nine percent reported they had at least one.
Other studies have shown that although people don't bring these symptoms to a doctor's attention very often, when they do the results aren't very good. Depending on the complaint, the success rate of treatment ranges from 40 percent to 80 percent.
Many people stop looking for help from the world of conventional medicine after a few disappointing encounters. But others press on, seeking the elusive diagnosis they know must be there.
Medical science often labels this problem "somatization." The term means, roughly, a tendency for some people to focus an unusual amount of attention on bodily sensations, to attribute minor changes to disease, and to seek medical treatment for them. Somatization is considered a mental disorder -- perhaps not a severe one, but nevertheless something that lives more in the mind than in the body.
While Engel believes that Gulf War Syndrome may be a collection of rather ordinary problems, he doesn't like the idea of somatization. It's too simplistic, he thinks, and ultimately dangerous and wrong.
"Somatization too often is used to discredit their [the patients'] experience," he says. The label alone minimizes the reality of the pain, the diarrhea, or whatever a patient is suffering. And it presumes to know what may be unknowable.
"I think we have to acknowledge the level of medical uncertainty here," Engel goes on. "We have to acknowledge there's a lot that goes on in people's bodies that we cannot measure or determine on testing."
Ultimately, a person's response to a symptom depends not only on the sensation itself and the situations in which it occurs, but also on what a person believes about it.
On the matter of Gulf War Syndrome this last idea is a delicate subject. Engel chooses his words with particular care.
Theories about what may be causing veterans' symptoms include toxic exposures, contaminated vaccines, exotic microbes, chemical weapons. Some congressmen, journalists and veterans' advocates say there is more illness -- and more severe illness -- than research indicates. A few believe a full-scale government cover-up is underway.
Engel doesn't regret the free-ranging national discussion about Gulf War Syndrome -- "it's what we're about in this country," he says at one point -- but he believes it's come at a price.
"If there hadn't been all this attention from [Capitol] Hill and the media, and if they [ill veterans] hadn't had such a life-changing experience as going to the gulf, then the beliefs they bring to the symptoms they experience might be quite different."
Engel is even willing to go a bit further. He suspects the huge amount of attention to Gulf War Syndrome has actually made things worse for some people.
"The magnitude of this can't be quantified. But in my opinion, it has happened," he says. "It's been large enough to be personally disturbing."
In 1994, the Defense Department established the Comprehensive Clinical Evaluation Program (CCEP), a voluntary medical program for Gulf War veterans still on active duty. It begins with a routine visit to a base doctor and ends, for the difficult cases, with a three-week stay in one of 14 regional medical centers. About 35,000 soldiers have enrolled.
The CCEP -- and in particular its advanced phase -- is the kind of diagnostic work-up that doesn't exist in the civilian world any more. Insurance companies won't pay for it, and many medical experts think its strategy of indiscriminate testing for dozens of diseases can't be defended on scientific grounds. Nevertheless, since its inception, about 3,500 men and women have gone all the way through the in-hospital phase of the program.
Engel and his staff urge the patients -- all CCEP graduates -- to think about the assumptions built into the CCEP. One of them is its linear approach to the problem of illness. For several days in the first week of the program, Engel writes this on the blackboard:
History Examination Tests Diagnosis Treatment Happy Face.
This approach works best for acute illnesses, he argues. Chronic problems and mild symptoms, however, are rarely resolved so neatly.
Sharing Medical War Stories
One by one during the first week, each patient relates his trips down this path, from the end of the Gulf War in 1991 to the most recent visit to the doctor. The narratives are long and convoluted, and most bear little connection to Gulf War service.
Sgt. Anita Denning's is typical of many Specialized Care Program participants, the staff members say.
She spent eight months in Saudi Arabia as a postal clerk, most of the time at a desert installation where she could feel the ground shake from mortar fire. After a Scud missile exploded overhead, she and some of her fellow soldiers took to sleeping in their boots and chemical suits.
She had several bouts of diarrhea in the gulf, and these continued when she returned home, especially when she exercised. The problem became "really, really bad," she says, after her daughter was born four years later. She missed a lot of days in her office job at the Pentagon, slept fitfully, and was always tired.
Ultimately, she was diagnosed with irritable bowel syndrome, a condition characterized by intermittent diarrhea and constipation. She also has wrist pain caused by a mild case of carpal tunnel syndrome.
For a long time, Denning, who is 27, didn't connect her health problems to the Gulf War. Last year, however, she (and more than 170,000 other gulf veterans) got a letter from the Pentagon saying she was within 50 kilometers of Khamisiyah, Iraq, when a munitions dump containing rockets filled with poison gas was blown up after the war. Although there's no evidence anyone was exposed to the gas, some people believe sub-lethal concentrations caused chronic illness in soldiers nearby.
"That's when the light went on," Denning says of the letter, "and I concluded that's probably why I was getting sick."
Nearly all the stories share a common feature. It's a roadblock -- sometimes temporary, sometimes permanent -- at the "diagnosis" step in the pathway Engel sketched on the board. When medical practitioners run into roadblocks, they turn to one of four options, Engel tells the group. He calls them "the four Rs."
Rejection. Send the patient away, saying there's nothing that can be done.
Referral. Send the patient to another doctor.
Retest. Backtrack, do some more diagnostic procedures, and try to get past the roadblock.
Rx. Prescribe a drug, try a treatment. If this doesn't work, fall back on a "prescription of disability." It hurts when you play catch with your son? Rx: Stop playing catch. Diarrhea whenever you take mandatory physical training? Rx: Don't take PT. Which often means, kiss your military career good-bye.
It's clear from the patients' narratives that smacking into the four Rs has caused a lot of unhappiness. As they look back, it's hard for them to separate the hurt bodies from the hurt feelings and frustration they've acquired in their journeys through the medical system.
Uphill Search for a Cure
This last fact is one of the central messages the Walter Reed program tries to make. It's not the idea -- the staff says emphatically and repeatedly -- that emotions caused the soldiers' pain. But emotion can change the perception of pain; can alter the attention paid to pain; can alter, in some sense, the meaning of pain.
Nearly every day, the group has a session with Roy Clymer, a psychologist, and Suzanne DeMarais, a therapist. The session is built roughly on the principles of "cognitive therapy" -- the idea that changing how a person thinks about things can sometimes change how they feel. In one of the early sessions, the two teachers ask about the internal conversation -- "the tape" -- each participant plays to himself.
"When I first got sick, it wasn't so much anger at being sick but anger at loss of control," says Sgt. 1st Class Robert Rolleri, who has been suffering from a seizure disorder and memory loss. "Not being able to drive, dependent on people, couldn't do anything, kept screwing up."
Rolleri spent the war not in Saudi Arabia, but in the German port of Bremerhaven. He worked as a military police officer. One of his jobs was guarding -- and crawling around on -- tanks and personnel carriers being shipped back from the gulf to the United States. He believes there may have been chemicals or toxins on the vehicles that somehow led to seizures he began having in 1997.
His problems have snowballed since then. He has had to switch anticonvulsant medications three times because of side effects. Initial skepticism about his complaints led to several angry confrontations with doctors, and a referral to a psychiatrist. He has trouble concentrating and remembering things, and his diminished capacity has caused resentment in his unit at Fort Bragg, N.C.
Recently, he also developed carpal tunnel syndrome, which he says took months for any doctor to take seriously. "I felt I was treated like a dog. Here I was in constant pain, and just a little bit of compassion would have been nice."
These problems -- and the worsening nature of them -- have left Rolleri very worried about his future. He's 45 and has 20 years in the Army. He fears that when he leaves he won't be able to get a job and support his family.
The key message on his tape, he tells DeMarais: "Unless there's a miracle cure, there's things I'll never be able to do again."
When it's Cruz's turn to talk, he once again wants to give some history. How he was working as a parts manager for a Chrysler dealership in the Bronx, making $5,000 a month. How he was in the Inactive Ready Reserve (IRR), a branch of the Army Reserve, with only 40 days left in his enlistment. How he got a telegram telling him to report for active duty, at $700 a month.
"God-dog!" says White. "You went to the Gulf War out of the IRR? No wonder he's mad. I'd be mad too."
When he returned from Saudi Arabia, however, Cruz decided to stay in the service. Despite downward-spiraling health, he made a name for himself as a recruiter, specializing, he notes with irony, in selling the Army to doctors, nurses and other health professionals. He even won a prize -- the Glen E. Morrell Award -- given to the Army's most successful recruiters.
"And I got QMP'd. Why did I get QMP?" he asks, referring to the "qualitative management program" by which the Army decides whether a soldier should be retained or discharged. "I can't pass my PT for the last three years."
Clymer probes him for any themes in what he's told the group, and what he tells himself.
"Sure. It's hurt," Cruz says openly. "It's not only that I'm physically hurt, I'm emotionally hurt."
"I think this is good," says DeMarais. "I imagine, Anibal, that every time you go to a doctor, these thoughts come into your head. Maybe we can find a way for that to happen less. Not make the thoughts go away, but make them be there less."
This occurs at the end of a class session. As the others stretch, pick up their stuff and head for the door, Steven Coy begins to talk.
He has said almost nothing for the first week, preferring to sit apart from the group and its rapid-fire, jargon-filled, profane banter. As a civilian, he feels vaguely out of place, even though he has the most "classic" case of Gulf War Syndrome in Class No. 28.
A longtime employee of Letterkenny Army Depot, in Chambersburg, Pa., Coy has had joint and muscle pains so severe that sometimes he has to roll out of bed in the morning and slowly pull himself up from the floor. He gets outbreaks of hives. He has been diagnosed with gastroesophageal reflux disease -- essentially, severe heartburn -- as well as irritable bowel syndrome. He's on medicines for each of those conditions, five in all. And there's the memory problems.
There is more to his story, however, than illness. With the staff out of the room, he explains he never would have made it to Walter Reed if it hadn't been for the intercession of his congressman, Republican Bud Shuster.
"I volunteered as a civilian to go over there and serve my country. Raised my hand, put my life on the line. And then they turn around and tell me they can't help me because I wasn't military. And they wonder why I'm frustrated."
He gets up from his chair and steps toward the table.
"I must have called fifty 800-numbers, and the first thing they ask: 'What was your prior military?' I say I've never been in the military."
He slams his hand down on the table. It makes a sound as loud as a pistol shot.
"That's it, they hang up. Every time I call, 'What's your prior military?' Never in the military." Boom! "They hang up. I must have called 50 times." He takes a breath and repeats it again. "So, someone finally told me to call my representative."
His pasty complexion is flushed and he's breathing hard. His animation has taken the others by surprise. It's not too much to say it has scared them.
"You quiet with your anger," Denning says, recoiling slightly.
"Man -- you're the man to watch out for!" says White.
Never at a loss for words, White says what the others are thinking. "I'm here with a lot of angry people."
He then adds a personal footnote: "I'm lucky. It's just hurting me physically."
Next: Living with Gulf War Syndrome
Soldiering On in the Face of Pain
Veterans Help Invent a Plan of Attack for Their Medical No Man's LandBy David Brown
Washington Post Staff Writer
Tuesday, November 24, 1998; Page A01Second of two articles
They don't fit the image of the hard-core chronically ill, the five people over in the corner of the gym at Walter Reed Army Medical Center preparing to work out with two personal trainers.
In fact, they look pretty much like everyone else.
"I just want you to know that I'm behind you today," Army Sgt. Anita Denning says as she gets onto a stationary bicycle behind Staff Sgt. Teromee White. "We're Ranger buddies today."
"I don't want you to over-exert yourself," White answers with mock solicitousness.
Karen E. Friedman, a physical therapist standing next to them, is worried about over-exertion, too. Which is why she approaches Denning's bike and punches several numbers into its electronic control pad.
"What I want you to do today is -- "
"Level 1?" Denning asks in disbelief.
"Yes, Level 1 for 20 minutes. Stop if you need to stop."
Denning laces up her Nikes and puts a white gym towel over the handlebars. Friedman's assistant, Cpl. Richard Sabin, kneels down and fixes one of the bike's toe clips. She begins to ride.
Exercise is a key part of the Army's "Specialized Care Program" for soldiers with the collection of ailments known as "Gulf War Syndrome." It's not the grunting, face-in-the-mud exercise of Army lore. This is judicious, moderate, unmacho. You won't see it on the TV commercials.
Like so much of the program, the purpose of the time in the gym is to help the soldiers unlearn habits and question beliefs.
About 185 Gulf War veterans have attended the Specialized Care Program in the last two years. They come voluntarily (and skeptically, in most cases) to explore ways to live better with their symptoms. The symptoms themselves -- which range from joint pains and intestinal complaints, to memory loss and concentration problems -- aren't investigated. That has all happened, exhaustively and with little satisfaction, before they arrive.
Denning and White were in Class No. 28 -- four active-duty soldiers, and one Defense Department civilian -- who sojourned at Walter Reed for three weeks last spring. Each day started with "stretching and strengthening" at 7:20 a.m., followed later by aerobic workouts, weight training, and practical instruction in lifting, pushing and carrying.
For most of the class, exercise is a painful reminder of how much they've lost to Gulf War Syndrome.
Denning and Staff Sgt. Anibal Cruz Jr., another member of the class, have both been excused, to one extent or other, from the physical training required of all soldiers. White announces "this is the first exercise I have done since November." Once an avid hiker and mountain biker, Sgt. 1st Class Robert Rolleri rarely goes out now because of joint pains and fatigue. Steven Coy, a civilian defense employee, is overweight and out of shape.
At Walter Reed, they're enrolled in what's called "quota-based physical therapy." They begin with an amount of exercise they can do with very little pain, and work up from that "quota."
Although it superficially resembles the physical therapy given to surgical patients and accident victims, the physical therapists at the Specialized Care Program assume their patients have no acute injury. Exercise can't impede healing. Consequently, pain doesn't herald imminent tissue damage, and shouldn't be interpreted as a signal to stop.
"Chronic-pain patients become super-sensitized, not just to pain, but to sensation in general," Friedman explains. "They complain of numbness, tingling, pulling, and have a very low threshold for discomfort. What 'quota-based therapy' does is try to raise the threshold. You want a bigger stimulus to trip the pain sensation. In three weeks, we hope to plant the seed that a lot of these sensations are normal, part of everyday functioning."
Friedman came to the program two summers ago after 18 years as a physical therapist in more traditional settings. Like everyone on the staff, she sidesteps the issue of what caused the physical complaints of the soldiers she sees. It doesn't concern her.
"It's like when I worked in a nursing home, and 95-year-old Holocaust survivors would say, 'My joints hurt because of torturing I suffered from the Germans.' Who am I to say no?"
When they have each finished their aerobic workouts, Friedman and Sabin put the five patients through cycles of weight training tailored for their complaints.
Denning, who gets shoulder pain, works on her trapezius and deltoids. Cruz, who chose a recumbent bicycle because of back pain, does hanging crunches. Steven Coy, the 39-year-old civilian, lies supine on a mat while Sabin, a gentle drill instructor whose sweatshirt has a gorilla on it, urges him through knees-up abdominal exercises.
Suddenly, Friedman looks at her watch and announces: "Okay, you guys got to get to something else. Time to quit."
As they head out the door and into the sunlight, the talk is all about the harm they've just done to themselves, and the price they'll pay for it. Sabin has heard this too often to try to dissuade them.
"You'll be complaining tomorrow," he says.
"This is the last time I'll feel good for a while," says White. "I'll be feeling bad tomorrow."
What is certain is he'll be back.
By the next week, something is changing. That's evident one morning when White announces he's ready to stop even though he's only halfway through his 20-minute session on the bike.
"No, you're not," says Friedman, who's making her rounds. "What's wrong?"
"I'm not sleeping. I didn't get any sleep at night."
Before she can respond, White stops pedaling. But then even before he's caught his breath, he asks her if he can do the remaining 10 minutes on the treadmill. She says yes.
As he heads off across the gym, Friedman acknowledges she was prepared to let him quit. "I wouldn't have argued with him, because it just wouldn't work." Telling people with chronic symptoms to get over it, or get on with it, is never a good strategy, she says. "But he went over and got on the treadmill himself, which is a good sign."
White must pass his next physical training exam to stay in the Army. For months, he's been facing it with dread and fear. Now, he seems to be regaining confidence in his body.
When he finishes on the treadmill, he moves on to the chest-press machine. Assignment: 12 presses of 45 pounds, repeated three times.
Which he does.
'Consumers' of Medical Care
One of the goals of the Specialized Care Program is to help patients become more sophisticated "consumers" of medical care. A bit of advice offered by the program director, Lt. Col. Charles C. Engel Jr., and his colleagues: Consider consuming less.
It's a truism of human nature that if you look hard enough, eventually you'll find something. Maybe not what you were looking for, but something -- something provocative, tantalizing, suspicious. When this occurs in medicine, what you find are diagnoses.
The people who come through the program carry an unusual number of diagnoses on their medical records. Moreover, there's a pattern to the diagnoses they get. Class No. 28, for example, has two people with obstructive sleep apnea, two with irritable bowel syndrome, two with carpal tunnel syndrome, and one with gastroesophageal reflux disease, a form of severe heartburn.
Unlike cancer or infection -- which are diseases that are either unambiguously present or absent -- these ailments occur along an infinite gradation of severity. Choosing the dividing line between normal and abnormal involves a fair amount of judgment on the doctor's part.
People with chronic pain who undergo repeated medical tests are especially likely to be diagnosed with conditions like these. Mild cases are often treated aggressively because an explanation -- a diagnosis -- is something both patient and doctor desperately want. This doesn't always solve things, however, and can even cloud the picture. Steven Coy, for example, takes a drug for hives and a drug for muscle pain, and the side effect of each is sedation. That isn't likely to make one of his other complaints, fatigue, any better.
The hazards of too much testing and too much treatment came up one day when White suggested that in the future all soldiers returning from the front undergo an exhaustive battery of tests like the one he's gotten in the last few years.
Engel acknowledged such a "shotgun" approach has great appeal because people assume tests are always accurate. The trouble is, they're occasionally wrong, and often ambiguous.
This is especially true when a large, healthy population is screened for uncommon diseases, Engel explains. In that situation, the tests will identify a few clear-cut cases of disease. But there will be a far greater number of equivocal results requiring further (and often more hazardous) tests before a doctor can confidently declare the person doesn't have the disease. And of course there are outright mistakes -- people wrongly diagnosed, and treated for something they don't have.
These are slippery concepts even for people working in medicine. It's not obvious that when you go looking for rare problems in healthy people, you're going to come up with a lot more "false positive" results than "true positive" ones.
Engel tries to illustrate the idea with an analogy about car alarms going off in the night.
It's more likely, he argues, that if an alarm sounds in a high-crime city neighborhood that it signals a real burglary than if it goes off in a sleepy suburb. But the conversation quickly degenerates into a discussion of where car thieves can best find BMWs, and it's unclear if anyone has followed the laborious metaphor.
Suddenly, however, Cruz jumps up from the table and gives a thumbs-up sign.
"Check," he says. "I finally got it." He sweeps his hand over his head in a gesture suggesting something has recently gone over it. He then offers his own example.
"If a person is at home, hasn't been outside, and they live in a place that doesn't have black widow spiders, and they test them for black widow spider bites, then if it comes back positive, it's much more likely to be wrong."
Engel gives him a smile that seems to say, "close enough."
'States' of Health
Roy Clymer, the program's psychologist, is talking about coronary heart disease. It's a problem that's nice and abstract. Nobody in the room has it.
Clymer observes that a lot of different things contribute to a person's chance of having a heart attack -- genetics, diet, smoking, lack of exercise, stress.
"The important thing is that most of these things are behaviors," he says as he lists them on the blackboard. He'd like the group to note the voluntary nature of most of those risk factors, but he doesn't belabor the point. He's working toward a bigger one. It's the idea that a lot of things go into creating health and illness in general.
Health and illness aren't absolute "states" like the state, in physics, of being a solid, a liquid or a gas. They're in constant flux and are "influenced by many things, some of which are under our control. But not all."
Clymer pauses. He's about to get into a subject freighted with bad memories for everyone in his audience.
"I'm going to talk to you about stress," he says. "I'm not going to talk to you about stress because I believe it is the cause of Gulf War Syndrome. I do not. I do not believe it caused you to be sick today. I do believe that stress can have an effect on your illness."
Stress is the most contentious issue in any discussion of chronic illness among Gulf War veterans.
That a person's mental state affects his health and colors his response to illness is neither new nor startling. The idea is central to most non-Western medicine. Its "rediscovery" in the United States is helping power the huge popularity of alternative and holistic treatments here. In the matter of Gulf War illness, however, the mind-body discussion has been singularly unsophisticated and rancorous.
Over the course of several days, Clymer gives a short course on the physiology of stress.
He talks mostly about experiments done on laboratory animals. He describes the "fight-or-flight" response -- how fear or pain causes the heart to beat faster, the liver to pour glucose into the blood, the pupils to dilate, the brain to become more alert but less able to embrace complicated thoughts.
He explains how lab monkeys show classic fight-or-flight responses when scientists randomly shock them with an electric current, but how the response eventually fades, and the animals withdraw into a passive, physiologically numb, state if the stimulation continues long enough.
"If you have no control, one response is depression . . . it shuts things down and protects," he tells the group. But, he adds, while withdrawal can be protective in the short-term, it ceases being useful once the danger abates.
Throughout this mini-course in experimental psychology, Clymer is content to provide the data and let his listeners determine what relevance, if any, it has to them. He doesn't preach. Sometimes, however, the steady stream of scientific anecdote grabs the group in a personal way.
This happens one day when he talks about a phenomenon called "conditioned avoidance."
He describes an experiment in which researchers use a mild electric shock to train a dog to become fearful and jump over a barrier whenever a light comes on. The experiment bears some similarity to the famous one done by the Russian physiologist Ivan Pavlov at the turn of this century. In that one, Pavlov rang a bell, and then fed the dog. After a while, however, he noticed the animal would salivate in anticipation of the food simply with the ring of the bell.
But there's a crucial difference between the two responses, Clymer says.
"With the Pavlovian conditioning, if you stop feeding the dog, it will eventually stop salivating. With this," he says, gesturing to the electric shock experiment he's sketched on the board, "the behavior goes on forever. The jumping will never stop."
It is an interesting distinction. If you train an animal to associate something good (like food) with an environmental cue (such as a bell), then you have to periodically "reinforce" the association by giving the food. Otherwise, the response to the bell will be lost.
However, if you train the same animal to associate something bad (like a shock) with a cue (like a light), the cue doesn't lose its meaning even long after the bad thing is taken away. When the purpose is to avoid -- rather than gain -- something, a conditioned response lasts forever.
This time it's Teromee White who has a flash of insight. He jumps up from the table and starts talking about pushups.
"It's like if I don't do pushups because I know it hurts every time I do a pushup."
"But if something has happened, if your shoulder has healed so that it won't hurt any more when you try a pushup -- " Clymer says, helping him along.
"Then you will never know," White says, finishing the thought.
'Autonomic Response Training'
The days at the Specialized Care Program are crammed with activities beyond the sixth-floor lecture room.
Rolleri and Coy work with an occupational therapist on ways to improve their short-term memories. They do drills on a computer and learn tricks for remembering lists. Midway through the second week, Rolleri goes to the grocery store and comes back with all seven items he'd set out for -- a small, but real, accomplishment.
Every day they have "autonomic response training" -- essentially relaxation and self-hypnosis. They meet as a group to talk about resentments and misunderstandings at home and work, and how to address them constructively. Once a week, a dietitian gives advice.
Inevitably, the group also becomes a kind of long-running improvisational drama, with its own subplots, conflicts and resolutions.
Rolleri, for example, casts himself as nay-sayer, suggesting at various points that everyone's troubles (his included) are really too trivial to deserve the Army's attention. This gets on people's nerves, and he's finally dressed down by the passive and religious Denning, who seemed unprovocable. Cruz and White together are a nightclub comedy team, but apart are deadly serious students of the issues at hand. Coy, the civilian, to the end maintains an excessive gratitude that he's been let into this military world.
It all ends with a graduation ceremony in the sixth-floor conference room, where so much of the three weeks was spent.
The big table is pushed against the wall. It's covered with soft drinks, coffee, four cakes, a half-dozen batches of brownies and cookies. The chairs are filled with Class No. 28, family members, and the staff.
Engel, dressed in combat fatigues, reads a short passage about the soldier's contribution to society. He thanks the patients for their patriotic service and asks if they want to say something. They all do. But it's Robert Rolleri, the nihilist, who surprises everyone.
"Nineteen years in the Army, and one day my life turned into a living hell," he says. "When I came here, I really had no hope, couldn't do my job, didn't know what to do." Then he breaks into tears.
"At least now I have some hope. Maybe I can get a job when I retire. Maybe I can support my family, maybe I can have a future, and for that I want to thank you a lot."
It seems too good to be true, and only time will tell whether it is.
A New Beginning
On his way back home to New Haven last spring, Teromee White smoked a cigarette and flicked the butt out the window of his Ford Escort. He hasn't had another one since.
Perhaps it was the admonitions "Do No Harm" and "Take Care of Yourself" echoing in his head. Perhaps it was simply a way to mark a new beginning. For some reason, it seemed like the right thing to do.
White's quitting smoking is perhaps the most tangible outcome of his participation in the Specialized Care Program. He hasn't been miraculously freed of his symptoms. He still has fitful sleep, an aching left shoulder, and congested sinuses. But other, subtler things have changed.
While previously he was willing to entertain only a permanent, one-shot cure for his various problems, now he's no longer opposed to the little things medicine can offer him. He takes a decongestant, and it has cut down on the number of sinus headaches he gets. He uses a natural pepper-based cream for his shoulder, and thinks it helps. He no longer views exercise as an all-or-nothing proposition.
"You exercise until your body tells you it's enough," he says. "That no-pain, no-gain is not true."
He's also confident now that his problems don't arise from a serious, undiagnosed illness that poses a threat to family members and fellow workers. "Everybody thought that I had some sort of disease, and we can catch it, too," he recalled. He still has questions, but they don't cause the anguish they once did.
"The program told me that I had control, that I could gain some sort of control about how I feel," he said recently. "Whoever spent the money for the program -- it was well spent, at least in my case."
White's experience is much like that of the rest of Class No. 28.
None of the five reports losing any of their big problems. Some have had new ones. Anibal Cruz, for example, had a prolonged course of antibiotics for an infection last summer, and suffered serious intestinal complaints from it. Steven Coy developed seizures a month after the program ended -- a problem that may have been caused, in part, by the medicines he's on. Until he retired last month with a 20 percent medical disability, Robert Rolleri continued to have a rocky relationship with doctors and supervisors at Fort Bragg.
At the same time, they all report more self-confidence and feelings of control. They say they are less burdened by their ailments, and feel more understood by their families. Three of the five do something nearly every day to help alleviate a symptom. Two have quit smoking. Two have sought further advice from the staff of the Specialized Care Program.
"When they stepped up and said there may be something wrong, we don't know everything -- that helped," said Anita Denning, who left the Army in July. "It made you feel like you're not going at it alone."
Despite such reports, Engel believes "it's still up in the air as to whether we're doing any good." As with so much about Gulf War Syndrome, he remains a study in agnosticism.
To find the answer, he and his colleagues have asked the Pentagon to fund a scientific study of the Specialized Care Program. They want to randomly assign 200 Gulf War veterans with chronic illness to either attend the three-week session at Walter Reed, or to get their usual care at their home bases. The two groups would then be observed for two years to see if they fared differently.
Such a study is of more than academic interest.
America's future wars are likely to be short and "low-intensity," with complicated rules of engagement and few battlefield casualties. Military doctors may see a growing number of illnesses like Gulf War Syndrome -- non-combat medical complaints arising from deployment, or that soldiers believe have arisen from it. Engel thinks it would be wise to learn whether something like the Walter Reed program works.
That so much illness and anger has come out of the Persian Gulf War is ironic. It was the walkover of the century -- the shortest, most lopsided, most nearly death-free war in which the United States has ever engaged. As it continues to have unexpected repercussions for the nation, so does it also for individuals.
Staff Sgt. Anibal Cruz Jr., for example.
Since the sojourn at Walter Reed, he says, his life has "changed dramatically." He has stopped searching for someone to blame for his ailments, and has regained a sense of self-worth. "I know that I can still function," he says. "The bottom line is that I may not be able to be a soldier any more, but I can still be a husband, still be a father, and still be a productive member of society."
At the same time, the war is far from behind him, and its effects are still being discovered.
Several weeks after he left Washington, Cruz took a "personal leave" day and drove back to Walter Reed from New York. He wanted to tell Roy Clymer, the program psychologist, about two dreams he's had repeatedly since the end of the Gulf War. He hadn't talked to anyone about them before.
The dreams are vivid and not complicated. In one, he and a bunch of other military policemen crossing the desert battlefield after the Iraqi retreat. The ground is covered with the enemy dead. In the dream, he becomes increasingly anxious as his fellow MPs get farther and farther ahead of him. Why can't he keep up? Unlike them, he can't bring himself to step on the bodies.
The second dream is even simpler. He is on guard in his bunker, in total darkness, waiting for the Iraqi attack that never came. He knows there is another soldier sitting beside him. But as hard as he tries, he can't make out his face.
Cruz is now exploring these dreams with a counselor in New York. What they mean, he's not sure. But he's no longer surprised he's carrying them around nearly eight years after the glorious victory. Things are more complicated than they seem.
What Cruz says about his experience would seem to be true -- in spirit, if not in actual fact -- for the entire country: "You don't have to be shot at to be taken out of your game plan."
The $115 Million Question
By David Brown
Washington Post Staff Writer
Monday, November 23, 1998; Page A15Since the end of the Persian Gulf War in 1991, a small scientific industry has arisen around the subject of chronic illness among veterans.
The federal government has committed $115 million to pay for 121 research projects, ranging from basic studies of the prevalence of various complaints to the effects of specific toxins on laboratory animals. About one-third of the studies are complete, and many won't have final results for several years.
Millions of dollars have also been spent by the Department of Defense and the Department of Veterans Affairs to create medical registries, in which Gulf War veterans voluntarily answer a questionnaire and are examined by a physician.
The Defense Department and VA registries, however, cannot be used to determine the prevalence of chronic health problems among the 697,000 men and women who went to the gulf. That takes a formal epidemiological study -- one that is comparing the health of 15,000 gulf veterans with that of 15,000 veterans who served elsewhere in the early 1990s. Results won't be available for about 18 months.
Nevertheless, the registries provide a revealing, if unscientific, look at "Gulf War Syndrome."
About 72,000 people have enrolled in the VA's Persian Gulf Registry and about 35,000 in the Defense Department's Comprehensive Clinical Evaluation Program (CCEP). The latter is limited to service men and women still on active duty.
In the VA registry, 29 percent of people complain of loss of memory, 26 percent headache, 24 percent fatigue, 23 percent skin rash, and 22 percent muscle or joint pain, with smaller numbers reporting sleep disturbances, breathlessness, diarrhea and other symptoms.
In the CCEP, 58 percent of people complain of joint pain, 49 percent fatigue, 38 percent headache, 42 percent memory loss, 43 percent sleep disturbance, 35 percent concentration problems, 26 percent rash, and other symptoms with lesser frequency.
When the registrants in both programs were examined, physicians couldn't come up with a diagnosis to explain the person's main complaint in roughly 20 percent of cases.
Research has shown that for the most unambiguous medical "outcomes" -- serious illness or death -- gulf veterans have fared no worse than fellow soldiers who didn't go to the gulf.
For example, one study found no increased rate of hospitalization for gulf veterans. Another found no increased rate of hospitalization for "unexplained illness" -- the category people suffering from Gulf War Syndrome might be expected to fall into.
Except for a slightly higher rate of accidental deaths, Gulf War veterans also have had no higher mortality after the war than soldiers who weren't deployed. A study of children of Gulf War veterans found no increase in birth defects, compared with a control population.
In September, a study was published in the Journal of the American Medical Association in which researchers asked 3,700 Air Force veterans (mostly reservists) whether they had any of 35 different symptoms. The researchers defined an "illness" as the presence of chronic symptoms in two of the following three categories: fatigue, mood or cognitive problems, or muscle and joint pain. (They didn't call the illness Gulf War Syndrome, although for practical purposes, that's what it was.)
They found that 45 percent of the Gulf War veterans had health problems meeting the "case definition." But 15 percent of veterans who had never gone to the gulf did too.
Images of War Hide in Memory to Ambush Soldiers Later
By David Brown
Washington Post Staff Writer
Tuesday, November 24, 1998; Page A09Doctors have described chronic, disabling illnesses in seemingly healthy veterans as long ago as the Civil War. Categorized with varying degrees of precision, they went under names such as "soldier's heart" and "effort syndrome." By far, the best-known after-action medical problem, however, is "post-traumatic stress disorder."
PTSD was first described in Vietnam veterans, and written into the medical canon in the 1970s. Today, it has grown far beyond its combat roots. Many forms of trauma -- civilian and military, natural and man-made -- can give rise to PTSD, psychiatrists believe.
PTSD causes many symptoms. Some -- such as feelings of numbness and isolation, poor sleep and decreased concentration -- resemble the complaints mentioned by veterans with "Gulf War Syndrome." Others, however, are distinctly unlike the Gulf War veterans' symptoms. PTSD sufferers, for example, have both intrusive memories of traumatic events, and amnesia for parts of them. They experience nightmares and flashbacks, and often find themselves in a state of inappropriate vigilance and arousal.
In all cases, trauma is the key formative event. But the definition of trauma has changed over the years. Originally, it meant exposure to horrifying events or experiences. In psychiatry's official definition, "trauma" means a person must have been threatened with bodily harm or death.
Two studies published last year in the American Journal of Psychiatry suggest the United States' recent military operations may force yet another reexamination of what constitutes trauma.
In one study, researchers evaluated a group of veterans of the military's mission to Somalia in 1993. They found an 8 percent prevalence of PTSD. That's about the same as in Gulf War veterans.
What was unusual about the Somalia veterans was the cause of the disorder. They weren't traumatized by combat, but by its absence. The nerve-racking conditions of peacekeeping, the need to exercise restraint in a country full of armed bands, the shifting rules of engagement -- they were the trauma.
In the second study, researchers at a veterans hospital in West Haven, Conn., questioned two National Guard units that had participated in the Gulf War. The soldiers answered a questionnaire one month after returning home, and then the same questionnaire five months and two years later. Although only 62 of 240 eligible soldiers completed all three questionnaires, what they said was nevertheless notable.
The soldiers were asked whether they had experienced 19 different events, which ranged from "seeing others killed or wounded" to "sitting with the dying" to "being in an aircraft that takes hostile . . . fire."
Between the questionnaire administered at one month and the questionnaire administered at two years, 90 percent of the soldiers changed their answers on at least one item. Nearly two-thirds changed two or more answers.
For example, 15 people who originally said they'd never seen "bizarre disfigurement of bodies as a result of wounds" two years later recalled having viewed such horrors during the Gulf War. Conversely, 10 people who originally answered yes to the question of whether they'd experienced "extreme threat to your personal safety" answered no two years later.
"That memory for traumatic events frequently changed over time suggests that the search for historical 'truth' may be fraught with complexity," the researchers wrote. "It may make greater psychotherapeutic sense to work with the patient's current version of the past, since the 'real' version may no longer exist."
Even though the Gulf War is only eight years gone, and its events were exceedingly well documented, the "historical truth" has been under debate almost since victory was declared. The post-war rumors of possible chemical weapons exposure; the belief in some quarters that the Pentagon covered up wartime hazards or gave soldiers dangerous experimental medicines; the belief that many veterans are seriously ill -- all of these may have changed people's recollection of wartime events. Of course, they may also be true. But even if they aren't, their telling and retelling may have turned them into real, traumatic "events" themselves.
Nevertheless, post-traumatic stress disorder -- as a formal psychiatric diagnosis -- doesn't explain much of what's going on with the participants in the Specialized Care Program. But that is not to say that memories of the war aren't potent ingredients of what the soldiers bring with them to Walter Reed.
This was evident late one afternoon when Staff Sgt. Teromee White stayed after the last class to talk about his experiences in the gulf.
He was in a quartermaster company in Dhahran, Saudi Arabia. On Feb. 25, 1991, he barely missed being killed when a Scud missile hit a barracks and warehouse. The attack killed 28 soldiers and wounded 98, and was the deadliest event of the war for American troops.
Before the missile struck, White was in the barracks. The privates in his squad asked if they could go to a convenience store just off the base. It was a trip of less than half a mile, but somebody above their rank had to drive them in a van. White momentarily considered sending someone else, but then decided to go "to make sure they didn't get into any trouble."
It was dark, and the group was just leaving the store when White and his charges heard a huge explosion. There were police sirens, ambulance lights and people running. Soon it became clear the emergency vehicles and the van full of soldiers were headed to the same place.
"We came around the corner and there wasn't no more building there," he recalled. "There was a hole in the ground. We saw stuff all over the place. I saw a boot with just a foot in it."
The scene was chaotic. White and his men immediately went to work, securing the front gate to the base. He remembers all this well. But his story brings up things he'd forgotten.
"The next day we were back in there picking things up, trying to find things that were left and that belonged to people. We were picking up [uniforms] just soaked with blood. Just full of blood."
He stands up and holds his arms outstretched, as if he were carrying a bundle away from his body. After a few moments, he lowers his hands and walks over to the window. The room is on the sixth floor and there's a clear view south toward downtown, with the Washington Monument in the distance. His eyes are full of tears.
"I really forgot about that," he says. "I hadn't really thought about that."
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