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“The Private Detective”: Misunderstood Spurts of Energy in ME/CFS

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This is the case history of a man on disability with ME/CFS who was shadowed by a detective documenting his brief daily moments of reduced fatigue as proof of fraud. It is excerpted from Dr. Bell’s free e-book Faces of CFS – Case Histories of Chronic Fatigue Syndrome,* published in August, 2000, and downloadable at www.davidsbell.com. “The Private Detective” illustrates one aspect of cases he has followed since the mid-1980’s. And the work continues, as Dr. Bell prepares to participate in trials at the new Mount Sinai ME/CFS Research Center in New York.

THE PRIVATE DETECTIVE

“Much of the present confusion about CFS is probably generated by the characteristic spurt of increased energy patients experience for extremely brief periods, during the frequently years-long course of their illness.”

Many who suffer from CFS experience a period of relief at some point in their day. The most severe symptoms seem to ease, and a window opens through which a few rays of sunlight pour into their life.

During this period, patients are able to undertake some of the activities that are ordinarily too difficult to manage. For an unlucky few, the shades are drawn and no window exists, or it is very short.

But the majority of people with CFS will have one, two, maybe even three, hours during which the window opens, and activity is possible, before total disability claims them again, stealing hope for at least another day.

This “window” of activity is such a common feature of CFS, I have found that I can actually grade the severity of a patient’s case based on the degree of energy a patient experiences during this window. In fact, I believe that its duration on any given day, over a period of months, can predict the likelihood of recovery from CFS.

CFS patients are as impatient as anyone else would be in the same predicament. They have job commitments to fulfill, families to nurture, life to live. When the ravages of the illness wipe out the majority of time available to them each day, they struggle to make the most of their hour or two of improved health.

Most CFS sufferers live for this window of time, and typically they will try to accomplish as much as possible when it opens, even though they have learned through experience that any exertion will make them feel even worse when the window closes again. Nevertheless, I have observed that most patients prefer to fly for two hours and then “crash and burn” afterward rather than stay within the confines of the hangar.

Eventually, this precious window becomes their life, but their exploitation of it can be dangerous – although not necessarily dangerous to their health. It certainly got Richard Watkins in a lot of trouble.

Richard was destined to be a Lyndonville lifer, constrained by either fate or good fortune to experience life in the comfort of upstate New York. While some young people curse such a fate, and compare it to being born in the Third World, Richard accepted it gracefully and thrived in the rural atmosphere.

In high school, he struggled with Mrs. Carson’s English class, but excelled in Mr. Osgood’s science class. It helped that Mr. Osgood was also the basketball coach. Richard was competitive and had the good fortune to be tall and very strong. It was rumored that Richard’s science grades would have been somewhat less stellar had his athletic prowess been less remarkable.

Richard lived for baseball in the summer and basketball in the winter, as did most of his friends. School work was the obligatory drudgery that afforded him his time on the field or the court.

Perhaps not surprisingly, college was a disappointment; academic knowledge for its own sake made little sense to Richard. Eager to get on with life, he paid scant attention to his advisors’ counsel to carefully lay out a plan for the next several decades. Instead, he fell in love, married a bright, beautiful girl from a nearby town, and jumped at the first good job he could find: a post at Rochester Plastics.

The job required hard labor, but it also promised opportunities for advancement into management over time. Richard’s life was not merely perfect, it was fun.

Then, four years after he began work at Rochester Plastics, he developed CFS. One day he caught the flu. It seemed like your ordinary garden variety flu, probably the same one his cousin and wife had caught at the same time.

Richard didn’t even come to see me to seek treatment for his fever, chills, sore throat, and aching muscles. He knew what I would say: “Aspirin, fluids, and bed rest.” (I hate it when people know what I am going to say, but they are usually correct.)

Anyway, Richard felt he could take a few days off to recover; his work record was perfect.

Curiously, this flu failed to resolve in the expected week’s time. Two weeks later, I ordered the routine blood tests, all the while not really expecting to find any dramatic abnormality, and I prescribed an antibiotic. I thought the flu might have turned intoa sinus infection.

The fever subsided, the chills and sore throat receded to the background, but the exhaustion grew more intense. In addition, headaches and stomach pain joined muscle and joint pain, and he developed an intense sensitivity to bright light.

I felt it was time to take a harder look. I ordered more tests: Mono, unusual infections like Cytomegalovirus and parvovirus, and tests for thyroid inflammation or new onset arthritis. The tests all came back as “normal.”

Two months later, I was very concerned. Richard had been a vigorous, healthy young man; he should have bounced back by then. After assuring him I was only doing my job, I inquired about HIV infection risk factors, and urged him to sign on the dotted line, permitting me to order a test for AIDS. Richard signed, but that test was negative, too. Perhaps, the problem was heavy metal poisoning, I mused; after all, he worked with nasty chemicals on the job site. Again, the tests were negative. I wondered if he had been affected by insecticide sprays from the nearby farm fields, but no evidence of poisoning turned up.

Finally, I sent him to the real doctors in the city.

After six months, hundreds of tests, and three doctors, someone said Richard probably had Epstein-Barr. Richard thought Epstein-Barr was Epstein’s Bar, some long-forgotten roadside joint where he might have picked up food poisoning, or worse.

I explained that Epstein-Barr was the virus known to cause infectious mononucleosis, but I had my doubts about the diagnosis. Richard’s antibody levels to the virus, one measure of a person’s degree of infection, didn’t seem very high to me.

Still, at least mono was a diagnosis, and that was necessary now. It is hard for a patient to be sick. It is harder still to feel ill and not know what is causing the illness. The added stress and anxiety increase discomfort.

Naturally, a patient’s thoughts turn to cancer, most people have heard of a relative in whom a cancer lingered without being found. With these thoughts, fear begins to grow, and discomfort increases dramatically. The doctor will reassure the patient that it is not cancer, but this is hardly comforting since the doctor has no idea of what is causing the illness in the first place. Actually, the problem with cancer is that it is usually silent in the first stages, which is why it is so difficult to find.

Whatever was causing Richard’s illness was not silent, it screamed many symptoms.

With the diagnosis of mono, Richard was still ill, but he could relax. “It” had a name. It was a wrong name, granted, but at least it allowed him to recognize the enemy. He could begin to separate what was due to his own fear and what was due to illness.

Over the next few months, other tests on Epstein Barr virus were run, as it had become clear that this was not the typical mono that would resolve in six weeks. Eventually, the diagnosis was changed to chronic fatigue syndrome, CFS.

An entire year passed, a year during which Richard was unable to go to work at Rochester Plastics.

The early flu-like symptoms had remained remarkably constant, but he had new ones, too. He had difficulty concentrating – a sensation he described as a kind of “brain fog,” and numbness and tingling sensations in his arms and legs. Those symptoms came and went, but one symptom was intractable: crushing fatigue.

It was not tiredness, not even exhaustion. It was the sick exhaustion of the flu. He would attempt to get up from his bed and move around, even go to work for a day or two, but the fatigue would end up knocking him flat again.

Eventually, Rochester Plastics put him on short-term disability leave. Every month, I sent a slip to Rochester Plastics promising the company that Richard would be back to work soon, hoping for the best. All those broken promises led Richard just one place: long term disability leave.

Richard spent his days lying on his couch, watching TV, and talking on the phone. For him, the unbidden lassitude was torture. There would be no summer softball league, no deer hunting in the fall, no winter basketball in the gym.

Inevitably, whenever Richard tried to shake himself out of his confinement and try to play a sport, the result was always the same:

• He would be flattened,

• And with even more muscle pain and exhaustion than before.

Two years passed. Richard’s symptoms weren’t getting any worse, and some of them were even beginning to slack off. In my efforts to help, I had prescribed antibiotics, antidepressants, and stimulants. Richard himself explored every conceivable homeopathic option, without appreciable results. I was unable to persuade myself that any of the medications I had prescribed had made a difference, either. It seemed to me that Richard was beginning to get better on his own.

By then, his level of activity during any given day hovered at around 40% of what would have been normal for him. At the start of his illness, I measured Richard’s activity level at about 20%.

Defining a person’s activity level in a scientific manner can be complicated, but not impossible. In 1988, two researchers performed a study in which they asked subjects to keep a detailed daily diary in order to calculate the amount of energy expended for every activity. There is a small amount of energy expended for sleep, more for playing the piano, still more for swimming.

Using their method, I might have calculated scientifically Richard’s daily caloric expenditure and come to some highly specific conclusions about his activity levels. But the method is tedious, and I have found CFS patients to be highly accurate and consistent in their estimation of the daily activities pre- and post-CFS. It has always turned out that their own estimates are just as good as the time consuming scientific measures. Not as fancy, but as reliable over the long term.

In the day’s early hours, Richard was rarely able to do more than brush his teeth or drink some juice. His mornings were spent on the couch. “I have been eaten by the couch,” he would say. Of course, he wanted to be active every day – but his body refused to respond to his will.

Except at two in the afternoon. It was the time when dead muscles seemed to come to life and his brain cleared a little, the period when he did not feel, in his own words, “like a bag of garbage.” Some invisible infusion of energy got him up and moving around his house, at first tentatively.

An hour or two later, he would say, “The plug has been pulled.”

He could feel the exact moment when the energy source was cut. When I evaluate CFS patients for their degree of activity over periods of weeks and months, it is apparent to me that they are afforded a relatively constant amount of time each day during which they can stand, walk, and function in a fairly normal manner. Over the short term, however, say over two days, there can often be a surprising degree of fluctuation.

Much of the present confusion about CFS is probably generated by this characteristic spurt of increased energy patients experience for extremely brief periods during the frequently years-long course of their illness.

In our culture, which rarely examines the day to day reality of chronic (as opposed to acute) disease, you are either sick, or you are well.

There can be no fluctuation, no middle ground. If your neighbor sees you at the grocery store:

• She assumes you’re always well enough to shop;

• She doesn’t celebrate the fact that you have managed to dress, put the car into gear, and find your way to the dairy case;

• Nor does she rue the fact that when you return home, you may lack the strength to take the groceries out of their bags and put them away.

• The matter is beyond her realm of experience and education.

By the time Richard had been ill for two years, and he had begun to feel well enough in the early afternoons for an hour or two of activity, he was eager to go out into the world.

When you have only about 20% of your normal energy level most of the time, an hour or two at 80% seems very good indeed.

Of course, despite his long illness, Richard looked completely normal to casual observers, and when neighbors noticed him outside his house, they assumed he had recovered fully.

His wife Jamie, in contrast, knew Richard well enough to notice consistent changes in skin tone and facial expression that heralded the moment when Richard’s energy would drain out of him. She described a lifeless expression in his eyes and a gray skin pallor, a color that was almost corpse-like.

These changes were too subtle for me to see, but Jamie, like most spouses who know their partners well, was a good observer. I wondered if these marked changes in expression and skin tone would offer insights into the disease itself.

Richard encountered the kind of resistance faced by every CFS sufferer when he tried to obtain full-time disability support from his company.

By then, CFS had become a controversial illness, even a notorious one. One side of the debate held that sufferers were either hypochondriacs, neurotics, or scam artists.

Perhaps not surprisingly, Richard’s company was reluctant to help. I vouched for Richard’s honesty and the severity of his illness, but I found it difficult to answer many of the questions posed by the company’s disability forms; they simply weren’t designed for a disease as complex as CFS.

Most disabilities are fixed or immutable, involving the loss of function of an eye or limb. A typical disability form will ask the doctor, “How many pounds can applicant lift with left hand?”

Technically, Richard could still lift 40 pounds. He was not confined to a wheelchair, he did not limp, nor was he blind or deaf. He was none of those things, but he couldn’t have worked an eight-hour day if his life depended on it.

In contrast to Richard’s day-to-day health status, the disability forms from Rochester Plastics were inflexible. At a loss, I finally wrote in the bottom margin, “Mr. Watkins is unable to sustain productive activity for more than three hours a day because of fatigue.”

My effort on Richard’s behalf seemed to help a bit. Rochester Plastics maintained Richard’s disability benefits at least for the time being. But the company was far from happy. In fact, Richard’s superiors were certain they were being ‘had.’

By the beginning of his third year of CFS, Richard began to improve significantly. The array of symptoms remained unchanged; they were simply less severe.

His ability to participate in the daily life of his household was expanding. He now experienced several hours each day, instead of one or two, when he could take a walk, go shopping, and generally feel as if he were a member of the human race once again.

I have always encouraged patients to take full advantage of these fleeting hours of better energy. To this day, I remain uncertain as to whether the increased movement actually stimulates improvement in some way, or whether a patient’s ability to function for some portion of a day is a hallmark of spontaneous improvement.

As I typically do with all CFS patients, I encouraged Richard to be as active as possible, whenever he could. For him just being able to go outdoors was a sign that he was not really dying, and might actually be getting better; if nothing else, it was important to his mental health.

Some people read books, some people watch television. Before his illness began, basketball had been Richard’s life, an essential ingredient of his existence. It’s fair to say he lived on air, water, food, and basketball. And when Richard started getting significantly better in his third year of illness, throwing hoops was the first thing he attempted in those early afternoon hours of heightened energy.

A friend installed a ramp under the basket in Richard’s driveway so that the ball would roll back toward Richard after he threw it, saving him a few extra steps. Richard would stand 10 feet from the basket, aim, and put the ball through. Most of the time, the ball bounced right back to him; he didn’t even have to move.

In this way, he could shoot hoops for longer periods. Occasionally, after a miss, he would jog over and pick up the ball. On such days, in his imagination, he was taking a buzzer shot for the New York Knicks in a tie game with the Celtics, and the crowds at Madison Square Garden were going wild.

Then he would walk back into his house and crash on his couch for three hours.

As the months passed, Richard slowly improved. He measured his gains by the strength of his shooting arm, the number of baskets he made in a row, and the total number of minutes he could actually shoot hoops. He had even begun taking some shots from the three point line.

There was no doubt that he was getting better. The hoop play was exercise and psychotherapy combined. No medicine I could prescribe would help his physical and mental health like basketball.

That summer in upstate New York had been a beautiful one. It stays light in the evenings until nearly nine in the evening. The wind coming off Lake Ontario was cool and pleasant after work and, like Richard, I loved to play basketball. I am a Celtics fan. I could happily abandon nearly everything else about Boston, but not the Celtics.

After a day in my Lyndonville clinic, I would sometimes stop by Richard’s house and we would play one-on-one. Even if our game lasted just 10 minutes, it was always exciting. The former athlete, still hobbled by CFS, and I were a pretty even match. We played like 14-year-olds, but in slow motion. Not uncommonly, I would limp home with a twisted ankle or a pulled calf muscle.

One day I received a call in my office from a man who wanted to set up an appointment to talk with me about Richard Watkins.

I made some time for him the following day. His name was John Armstrong. He was accompanied by a tall, gaunt man with sallow features and decidedly shifty eyes. Armstrong failed to introduce his companion, who stood behind him, his eyes darting from door to window.

This mystery man seemed to have stepped right out of a Fifties gangster film. I thought I could make out a bulge near the armpit of his poorly tailored black suit. I speculated that he was Armstrong’s body guard, and that the bulge was a holster. For a town the size of Lyndonville, this was really an exciting development.

Armstrong sat in the chair beside my desk; his companion apparently preferred to stand. Armstrong fixed me in his gaze and began: “I am the plant manager of Rochester Plastics. Your patient, Richard Watkins, is one of our employees.” “Okay,” I said.

“We have papers, signed by you, that state Mr. Watkins is physically disabled with chronic fatigue syndrome.” “Okay,” I said.

Armstrong stared at me accusingly. “Mr. Purtillo here…” and he paused to look at his partner, “is a private investigator. Our company has hired him to investigate this claim.” “Okay,” I said.

“We do not think Mr. Watkins is sick. In fact, we have videotape of him playing basketball.” As if on cue, Purtillo, still standing, caught my eye and exposed the corner of a videotape he was carrying in his suitcoat pocket.

“Now,” continued Armstrong, “I’m sure you may have been convinced that Mr. Watkins is sick, so I thought you would like to know about this videotape.”

I cleared my throat as I tried to collect my thoughts. “I am aware that Mr. Watkins has been playing basketball in his backyard,” I said finally. “In fact, I have been playing basketball with him – and on a fairly regular basis. Maybe I’m on that tape,” I added in an attempt at humor that fell flat. “If you had called me about this, I could have saved you some time and money.”

Armstrong stared at me, his mouth open. If Richard Watkins was well enough to play basketball, he was well enough to work, Armstrong insisted.

In turn, I tried to explain the subtleties of a disease that left its victims bed-ridden or couch-ridden 22 hours a day, but sometimes allowed them a short period of heightened energy, a period during which they might appear to the uninitiated to be perfectly well.

I told Armstrong that although Richard often could shoot hoops with me for as much as 30 minutes at a time, he was still too weak to work eight consecutive hours. I added that, not only was I aware of Richard’s hoop shooting, I had encouraged it as exercise therapy because I had hoped it would hasten his recovery.

My words seemed to make no impression at all.

Armstrong really wanted me to look at the tape. I assured him that unless he could show me something other than Richard standing quietly for 15 or 20 minutes in front of a basketball hoop with a wooden ramp underneath it, I didn’t need to watch the video.

I told him, too, that I believed Richard was improving, and that he might be able to return to work within the next six months, as long as Rochester Plastics could offer him a job with flexible hours.

Armstrong promised me that the matter would be taken up for discussion – in court.

I have few regrets in my life. To this day, I regret my failure to ask Purtillo the question that still haunts me: How many hours did he have to hide in the bushes behind Richard’s house to get his 15-minute video?

The sight of the bulging holster caused me to bite my tongue, however. I remained silent.

Months passed without further word from Armstrong and Purtillo. I filled out yet another disability form from Rochester Plastics on Richard’s behalf. Under a section called “current treatment,” I noted that I was encouraging physical activity for my patient.

Although not every CFS patient can boast of improvement, Richard’s return to health continued.

• Four months after my encounter with Armstrong and Purtillo, he was able to go back to work half-time, with some modifications in his duties.

• Six months later, Richard went back to work full-time.

Years have passed and Richard has proven to be one of the lucky CFS sufferers: He has recovered completely.

He is not only working, but coaching basketball on the side. Sometimes, on warm summer evenings, Richard and I throw hoops together and, afterward, drink iced tea.

I’m kind of sorry that we never had an opportunity to see that video played in court.

David S Bell, MD, Aug 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. This information has not been evaluated by the FDA. It is general information only and is not meant to prevent, diagnose treat or cure any condition, illness or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and reviewing it in collaboration with your professional healthcare team.

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