This ME/CFS patient case history is one of 10 that Dr. David Bell included in his book Faces of CFS – Case Histories of Chronic Fatigue Syndrome, published in August, 2000 (and downloadable free at www.davidsbell.com).* Each case illustrates a different aspect of the illness that he observed in managing patients affected by the ‘Lyndonville Outbreak’ in New York, and none remains more fresh or intriguing than this one.
“This minor test is one of hundreds that prove to me that CFS is real and can be studied.” – David S Bell
I had been treating patients in my Lyndonville clinic for 10 years when, one day, I happened to pick up the chart of a patient whose name was unfamiliar to me. He was awaiting me in my examining room.
I quickly learned that Edwin Maxwell was the man who owned the beautiful farm on the Stillwell road. I had admired this farm every time I passed it on my way to the nearby hospital. The old barns were always maintained with care. I had come to expect an orderly procession of snowdrops, tulips and lilies on tended patches of lawn every spring and summer. I could see that a lovely stream ran through the rear of the property, which looked like a European forest – tidy, but natural, as wonderfully wild as anything could be and still be called a farm.
I also knew whoever tended this farm had a certain mysterious wisdom. If hay had just been cut on the Maxwell farm on a summer day, you could count on three sunny days to follow. Even the weather seemed to respect this farmer; his sixth sense was more reliable than any TV forecast.
I observed, as well, that there was no rush, no great urgency, to this farmer’s life. He tended his fields with patience, as if he knew that the earth would unfold its crops the way life unfolds its secrets – all in due time.
I liked the 45-year-old Edwin Maxwell immediately. He began our conversation by letting me know he was Dr. Wilson’s patient and would remain Dr. Wilson’s patient. He wanted to talk to me about this new disease I was studying, however, because he knew something about it.
He allowed as how he had every intention of paying for his visit, but he wanted me to understand that he was there to tell me something about CFS, not to be treated.
I settled back in my chair and waited. By then – the autumn of 1988 – there had been so much publicity about CFS that literally hundreds of people, some of them writing to me or calling me from the four corners of the earth, had already offered me their theories about what was causing CFS.
These theories of causation ranged from discarded plutonium at the nearby West Valley nuclear processing plant, to PCB’s in the salmon of Lake Ontario, to yeast in the intestinal tracts of sufferers. Then, as now, I listened to every one of these ideas with honest interest.
I continue to believe that, someday, someone would come up with the correct answer. Nevertheless, even then, these theories were growing pretty thin, sometimes bordering on the weird.
Edwin continued by stating that he, too, suffered from the disease I was studying. He was not looking for confirmation from me; in fact, his expression brooked no argument. He explained that he had been comparing notes on his symptoms with a number of his friends and neighbors who had CFS and were my patients.
I confess I was surprised: Most people with CFS show up in my clinic in a state of perplexed misery, wondering if I can tell them what is causing their joint pain and headaches and exhaustion. Edwin, in contrast, seemed to have a rare intellectual grasp on the disease.
When I tentatively asked him to tell me about his symptoms, he explained that the fatigue was the worst.
Three years before, he said, he could lift six, maybe seven, wagons of hay bales if he had to, and feed them onto the conveyor belt to the barn loft. He could plow and roll 17 acres of land in one day. Had for years – until three years ago. He added that he suffered from scratchy, sore throats. He had muscle pain, but he also pointed out that there was no reason, at his age, to have muscle pain. Hell, his father was still baling hay at 70.
He reported with obvious chagrin that he needed to wear sunglasses while he worked, even though he had always disliked sun glasses; they were something city people took to the beach.
So Edwin Maxwell could have CFS, I mused. Okay – now what? I waited.
“This spring,” Edwin said, “I had a lot of fields to plant in a short time.” He was choosing his words carefully. “The winters are okay, because it’s easy to cut the days down and get the extra rest. But not in the spring. There is so much to be done after the geese leave.”
Lyndonville happens to be on the migration pathway of Canadian geese. These great birds descend on the land for four to six weeks in the early spring, and when the fields begin to dry out from the winter snow, the geese head across the lake toward Canada. It is a time of great excitement in Lyndonville. The days begin lengthening in earnest now, and the geese are incredibly noisy.
You don't even mind being woken at five in the morning by two thousand geese in the back cornfield. They leave when the ground begins to dry, the beginning of the plowing season.
“I remembered that the spring before,” Edwin continued, “I got poison ivy on my arm while cutting some brush in the back of the house. The poison ivy was nasty, but I noticed that the fatigue was better.
“I didn’t think much more about it. Then, this spring, just before plowing, I decided to pull up some poison ivy roots and rub them on my arms. Afterward, the itching was horrible, but my fatigue got better for about two full weeks. I could work just like before I got this disease, and I got all my planting done in time. But I noticed that as the poison ivy wore off, the fatigue came back.”
Edwin Maxwell was a careful observer of not only nature, but of himself, I realized. He asked for nothing in return. He was imparting some information to me, in case I was interested.
I was interested. New concepts about CFS either fit, or they did not fit, based on the selective “principles” I have developed over years of observation, principles framed by my experience. I realized immediately I had just heard a new “principle.”
Edwin’s revelation meant that the fatigue in CFS was not fixed; it could be variable. It could come and go, and was just a symptom; perhaps not even a necessary symptom. Theoretically, you could have CFS without being tired!
Consider the implications: if you were shot, or had a broken bone, little would be changed if you also acquired poison ivy; neither would exposure to the weed impact on your tuberculosis or your depression or your radiation sickness.
Poison ivy was an allergic response generated by the immune system, and localized at the point of exposure. Edwin was suggesting that this immune response – a sharp blip in the day to day functioning of the immune system, resulting from exposure to an allergen – might somehow diminish the fatigue in so-called “chronic fatigue syndrome.”
I had already discovered that among my CFS patients who were children, particularly, at least half had early childhood histories of either asthma, or allergies to various common substances.
I knew that there were a number of papers already published in the medical literature connecting CFS to medical histories of “atopic” illness, also known as allergies. A history of allergies appeared to be a risk factor for acquiring CFS. In fact, it was one of my established “principles” of the disease that a complex, if poorly understood, relationship existed between having CFS and allergies.
Yet, Edwin was telling me that if you applied an allergen to a small patch of an arm – if you localized an allergic response, in other words – you could make the fatigue in CFS go away while the allergic response lasted.
It didn’t really matter to me whether this held true for anyone else in the world. If it was true for one person with CFS, then it provided an hypothesis that could be tested in other CFS patients. The key was to learn whether this phenomenon represented a fundamental physiologic mechanism of the disease, or was just an interesting fluke.
If consistently true of all CFS sufferers, then any theory of the cause of CFS would have to hold an explanation as to why a poison ivy attack gave Edwin Maxwell an energy boost.
Sometimes when you think a great deal about something, you get so used to your own thoughts that they begin to seem dull. It takes someone else’s ideas to wake you up again. Edwin watched me as I struggled mentally to fit these new pieces of the puzzle together. He could see that I was taking his comments seriously.
I was ready to accept that fatigue need not be present for someone to have CFS.
I knew several people who lived in families where one member or more was thoroughly debilitated with full-blown CFS, and who suffered from severe intellectual problems along with other symptoms highly suggestive of CFS, even though they lacked the accompanying exhaustion. In fact, they had no more
than ordinary fatigue.
Could you jettison fatigue from the definition of the disease? I think you could, although this view would be unlikely to be published in a medical journal, especially since, even today, members of the scientific establishment are unwilling to agree that any of the symptoms of CFS are “real” and not psychiatric in origin. To persuade this same community that you can have what they call “chronic fatigue syndrome” without having “fatigue” would be next to impossible.
Nevertheless, the variability of fatigue – the idea that some people could have the disease without being tired – had become for me a defining principle. In truth, if this principle proved true, then the margins of CFS would begin to blur with the margins of attention deficit disorder (ADD), and other learning disabilities, especially in children. That was the population in which I most commonly saw patients with all the symptoms of CFS, minus one: fatigue.
Edwin Maxwell’s story got me thinking more intensively about the cause of the fatigue in CFS. I was intrigued that a natural substance, one manufactured by the body, called interleukin, might be the culprit.
While it may seem naive to look for a single substance responsible for fatigue, it did not seem a hopeless task. Scientists have been experimenting with one type of interleukin, interleukin-2 (or IL-2), as a therapy for several kinds of cancer. What researchers inevitably find, however, is that it doesn’t take very much IL-2 to induce symptoms in cancer patients that are almost as bad as the cancer.
Amidst the numerous side effects that include confusion and mood changes, IL-2 also causes profound fatigue when it is administered as a drug therapy.
Some months before Edwin Maxwell’s visit to my clinic, I had published a scientific paper with a collaborator, internal medicine specialist Paul Cheney, in which we reported that children and adults with CFS had startlingly high levels of the receptor molecule for IL-2. These levels were so high that it implied that the chemical IL-2 could be causing the fatigue and other symptoms of the disease.(1)
I realized that Edwin – if he was willing – could help me test my nascent theory that measuring IL-2 levels might be a way to quantitate the fatigue in CFS in a laboratory. He was willing.
I told him we would take blood samples from him when he was exhausted and measure IL-2 receptor. Then, we would apply poison ivy to his arm and wait until the fatigue improved. When the poison ivy kicked in and the fatigue went away, we would draw more blood. I suggested we do this three times, to be sure of our results.
Edwin liked my idea. It made sense to him. One sunny afternoon at the end of July that summer, I drew blood from Edwin’s arm during a “normal” period when the farmer’s exhaustion was pretty severe. I asked him to maintain a kind of symptom severity journal, as well, which required him to rate the severity of fatigue and 11 other symptoms on a scale of one to ten, with ten being the worst.
After I drew his blood, Edwin himself rubbed poison ivy on his arm. A week later I met him in the emergency room where they kept a camera and photographed the rash on his arms. A few days later, Edwin’s fatigue had subsided substantially, and I drew another sample of blood. We waited for the good effects of the poison ivy to wear off. Then we repeated the entire process.
We did not get to the third trial because by then Edwin had begun to dread the effects of the poison ivy as much as he had grown to dread the fatigue. He begged off, and I respectfully complied with his wishes. I already thought him very brave to offer himself up to medical science as he had done.
Also, the emergency ward staff was beginning to look at me in a funny way because I kept photographing the poison ivy someone was giving himself. Ah, science……
Ours was never anything more than an informal experiment, one that ended somewhat prematurely, but its results were provocative.
Just as Edwin had reported, his fatigue, as well as his other symptoms, were diminished when he was suffering from acute poison ivy. Somehow, this classic allergic response mitigated his most debilitating symptoms: fatigue, compromised intellectual capabilities, and physical pain.
However, the results failed to confirm beyond all doubt my theory about the relationship between IL-2 levels in the blood and fatigue. The results did suggest that fatigue severity was not just a coincidence, the normal ups and downs of CFS symptoms. It was intriguing to speculate that this relationship could even be someday turned into an effective treatment of the symptoms.
Unfortunately, the options are not that good. Edwin preferred the regular CFS symptoms to severe poison ivy symptoms. Maybe it’s not such a great treatment.
Medical science is cumbersome. Hints, such as the hints produced by this experiment, cannot be published in medical journals without real proof. And to conduct a proper experiment takes a great deal of time, money and paperwork, all of which are in short supply for the clinician. But the most frustrating part is the inability of clinicians to communicate to those able to do real experiments that CFS is real and must be taken seriously.
Two weeks ago I attended a neurology conference and CFS was dismissed by the lecturer as a minor psychosomatic nuisance for which there were no tests. The real problem is that academics and governmental public health personnel refuse to put aside their biases and look for the proofs. They seem content to criticize experiments like Edwin's as incomplete. And of course they are correct.
But Edwin's poison ivy treatment was over 10 years ago [now more than 20], and still nothing has come from it. This minor test is one of hundreds that prove to me that CFS is real and can be studied. From a scientific perspective, the relationship between the debilitating symptoms of CFS and allergic response is fascinating. I have been naive to think that it would be fascinating for others.
The misperception that CFS is psychosomatic comes only from scientists' inability to look beyond their psychosomatic biases and look for the proofs.
Edwin doesn't care, and in this respect he is unique. He gets on with his life, tends the springtime garden with care, manages to get the hay in every summer. He is able to accept the presence of symptoms as he accepts hail which damages the apple crop. And he is lucky, his symptoms are relatively mild and he can ration his time. If he worked in a factory assembly line with rigid hours, he would not be as lucky.
I rarely see Edwin now. Sometimes, while driving by his beautiful farm on the Stillwell road on my way to the hospital, I wave to him in the flower bed, or when he is putting the tractor into the barn. He is busy getting on with the business at hand, he doesn't have time to feel sick.
– Dr. David S Bell, MD, Lyndonville, New York, August 15, 2000
1. Citation: “Interleukin-2 and the Chronic Fatigue Syndrome,” Annals of Internal Medicine, Feb 15, 1989, by Paul R. Cheney, MD, PhD; Susan E. Dorman; David S. Bell, MD.
* This article is excerpted with kind permission from Dr. Bell’s classic book Faces of CFS – Case Histories of Chronic Fatigue Syndrome; © David S Bell, MD, 2000. It may be downloaded as a free eBook at Dr. Bell’s website www.davidsbell.com/DSBFaces.htm. If any remain, paper copies of the book may still be purchased for $25, as explained in the PDF.