Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (21 page)

Essentially, medical investigation requires that a number of things come together. It takes a benefactor, a team of talented scientists, and, of course, a disease outbreak. All three would normally move independently of one another, but, like the three hands of a clock, every so often they line up perfectly. In 1927, just that happened.

Matheson had been suffering for nearly a decade from the chronic aftereffects of his case of encephalitis lethargica. Like most of the patients, he could see the bleak future ahead of him, the slow decline into immobility. Every tremor or stunted movement was a reminder that he was beginning to lose control. For a man like Matheson, that was unacceptable. Matheson’s original budget for his commission allowed for $10,000 per year, by today’s standards around $120,000.

In addition to Neal, the Matheson Commission was composed of a number of New York neurologists, including Tilney, and specialists in public health, like Park. A major goal of the Matheson Commission was to bring together scientific research with public health. It was this intimate relationship between New York’s public health and the neurological research that set New York apart from other cities, like Chicago and Philadelphia, struggling with the problem of epidemic encephalitis.

While Neal’s office remained at the academy, the rest of the commission was headquartered in the new, state-of-the-art Neurological Institute, which itself was to be part of the new Columbia medical facility. Columbia’s research and hospital facilities rose in great brick blocks out of the Washington Heights neighborhood. Through its windows, there was an unobstructed view of Manhattan stretching out before it, the Hudson, columns of smokestacks in neighboring New Jersey, and, just in the distance, the construction of the polished Washington Bridge reflecting silver light off the water.

The Matheson Commission took on this epidemiological endeavor to study sleeping sickness, but it also aimed to treat the victims themselves. That in and of itself was a unique approach to a medical investigation. In most cases, an epidemic disease and its relationship to people are the focal points of research. Patients either die of the disease or recover, and the work of the investigators is to figure out how the disease is spreading and create a solution or vaccine to stop it. The Matheson Commission faced a unique challenge. Victims of encephalitis lethargica who survived did not necessarily recover. Instead, they lived in medical purgatory, neither dead nor well. For the Matheson Commission, helping the patients as their brains slowly eroded was just as critical as creating a vaccine.

T
he first thing the commission needed to do was get a full understanding of this pandemic. Few diseases have had such a thorough and organized investigation in so short a time. And this was no easy disease to chronicle. Investigators did not have a definitive test to determine encephalitis lethargica, and the disease was often misdiagnosed. The outbreak occurred in two phases, with a first wave of initial acute cases, followed by a second wave of chronic cases. Complicating things further was the fact that acute cases could go completely unnoticed with mild symptoms, and only years later, when the chronic symptoms like Parkinsonism or mental impairment surfaced, did doctors realize the patient had suffered a case of the disease. Epidemic encephalitis had been confused with everything from influenza to polio, depression to schizophrenia. In order to get any sort of handle on this disease, the physicians first needed to determine exactly how many cases there had really been.

The New York-based group of scientists decided to catalog not only the thousands of cases in New York, but also cases of the disease abroad. Neal sailed for Europe in 1928 to visit the Lister Institute, Sheffield Medical School, and the National Research Council in England, then clinics at The Hague, the Pasteur Institute in Brussels, and the Pasteur Institute in Paris to learn their theories and treatment plans. She also planned to meet with Arthur J. Hall, who first recorded the outbreak in London. Meanwhile, Tilney recommended that there be a network of neurologists in this country, so that doctors in cities throughout the United States could notify the Matheson Commission of cases and treatments they found effective. Another committee member recommended that a federal board be established in Washington to document any outbreaks of this disease in the country.

After the commission gathered all of this epidemiological material, they organized it into three separate Matheson reports, as well as a book authored by Neal in 1931. The Matheson Commission found that encephalitis lethargica had been reported all over the world: Ireland, England, France, Holland, Sweden, Austria, Algeria, Greece, China, the Philippines, Cuba, Brazil, and Canada, not to mention throughout the United States. The commission also compiled everything that had ever been printed about epidemic encephalitis—in all languages. They had articles from widespread places: from China to Chicago, Australia to Siberia. They also found at least seventy-five different types of treatments, testament to how little the medical world knew about dealing with this disease. Neal managed to compile around one thousand case studies for the Matheson Commission, and over 80 percent of those would be seen at the Neurological Institute.

W
ith a firmer understanding of this pandemic’s immediate history, the Matheson Commission moved on to its next and most important task: developing a vaccine and testing it on humans. With theories about this disease covering the full spectrum, it really came down to two questions. Was this disease
caused
by a particular bacterium or virus, or was the encephalitis the body’s reaction to a typical infection elsewhere in the body? And second, why was encephalitis lethargica occurring in epidemic form? There were three fairly solid theories as to what the culprit was, which determined the paths the vaccines would take.

One group of researchers believed epidemic encephalitis was caused by an unknown, filterable virus, much like the one that caused polio. Find that virus, and they could create an attenuated vaccine—one with a harmlessly low level of the virus, but enough to prompt the body to produce antibodies. With the electron microscope a few years away from completion, some microbes themselves were not even visible. Researchers passed blood samples through filters and took it on faith that something was there, even if they couldn’t see it, calling these invisible invaders “agents” that caused an infectious disease.

Another group focused on the search for a bacterium, primarily a streptococcus, that could be the culprit. In this case, it was believed a bacterium was causing localized infections in the mouth. Culture the bacterium, and a vaccine could be made out of bacterial cells. The second vaccine, known as the “Rosenow vaccine,” was named for Dr. E. C. Rosenow of the Mayo Foundation, who not only treated patients with his form of vaccine, but also removed their teeth to stop the infection’s point of origin.

The last theory was that epidemic encephalitis was linked to the herpes virus. The vaccine was created by Dr. Frederick Parker Gay, who developed “A and B vaccines,” which would test a control group of patients against a group given a vaccine made from hyperimmune rabbit brain tissue. In the case of the A and B vaccines, the vaccine would let the animal build the antibodies and lend them to the human.

Vaccine development is notoriously complicated and fickle. For one thing, scientists are often dealing with a “living” organism. Too little of the agent in a vaccine is useless; too much can infect the patient with the very disease it’s meant to prevent. “Dead” viral or bacterial cells often fail to push the body’s immune system into action. And, of course, researchers always take a risk when injecting foreign material into the human body. It might elicit an immune response, just not the one they were aiming for. If the body rejects the foreign substance, it might respond with any number of “post-vaccinal” complications—most notably, encephalitis.

The vaccine trials were quickly under way, with tests on patients at the Neurological Institute, as well as a group of children at Kings Park State Hospital. No armchair benefactor, William Matheson himself was a test subject. His personal physician since 1928 had been Dr. Rosenow, and Matheson believed he was receiving great benefit from the Rosenow vaccine and had even undergone Rosenow’s “treatment” to have many of his teeth removed. Matheson may have been one reason Rosenow’s vaccine was still in the race. Rosenow himself was regarded as “unbalanced” and “paranoid” by some of his colleagues. Most researchers showed little faith in his streptococcus bacterium theory, not to mention his treatment for it. Virology was new and exciting; it was the future of medicine in the 1920s. Bacteriology, in its heyday during the late 1800s, was the distant past.

Rosenow also came under attack from Neal, who did not much believe in his theory. Infighting was inevitable among so many talented scientists who held fame and a new vaccine within their grasp. About this time, Neal came under attack from the rest of the Matheson Commission. It’s hard to know how much was valid and how much was driven by the fact that a woman was at the helm. Dr. Kenton Kroker, a medical historian writing about the commission, said that “Neal’s position as a woman made her somewhat of an outsider within the overwhelmingly male circles of medical administration, practice, and research—yet she emerged as the single most important member of the Matheson Commission.”

A flurry of letters back and forth between members of the commission and Matheson either condemned Neal or requested outright that she be replaced. The letters carry the male camaraderie one would expect from that time. Some are addressed to “My Dear Skipper” and peppered with references to the week they spent yachting together, as well as greetings from their wives. But when the subject of Neal is addressed, the tone changes.

In what must have been a humiliating turn of events, Neal was asked to leave a Matheson Commission monthly meeting so they could discuss her. The member writing a letter to his dear Skipper Matheson described it: “I then brought up the question as to whether her personal delinquencies as to irritating people were sufficient to outweigh her other qualifications for the work and whether to continue with her or endeavor to find someone to take her place.” After much discourse on the subject, it was decided unanimously that “aside from her personality, she was the best qualified person for the work.... ” Neal’s “lack of tact and loquacity” would be brought to her attention by the commission, so that she might “mend her ways.”

While Neal irritated a number of the men she worked with, others were surprised by the reaction of their male colleagues and enjoyed working with Neal, especially Tilney and Park. In fact, Park had hired a woman for his bacteriology lab when New York’s health department was at its strongest. Her name was Dr. Anna Williams, and she was one of the best bacteriologists in the country, with a keen ability to find anything beneath the microscope. Still, many male physicians in the city ridiculed Park’s work with both Williams and Neal, referring to the lab as Park’s “harem.”

It was decided that two cases of the flu and no vacation time in a year had probably played a role in Neal’s personal demeanor. Either way, the one thing they all agreed on was that she was too talented and qualified in this field to let her go. Tilney even recommended that she step up her involvement, maintaining her ties with the health department and having greater involvement in the Neurological Institute, as it would “enable her to be in touch with different foci of encephalitis throughout the City and also make it possible for her to have official contact in follow-up.... ”

D
uring the vaccine trials, the Morgan Ward of the Neurological Institute served as the center-ground for the commission. Neal hired a full-time neuropsychiatrist, three nurses, and a secretary for the Matheson Commission alone. Patients would come into the clinic at the institute to be studied, treated, and given vaccines, but the physicians would also visit the patients’ homes, follow up on how they were feeling, and keep detailed notes. The vaccine trials were certainly “on the encouraging side.” The commission rarely got to see acute cases of the disease—after all, the epidemic was considered over by then. About one-tenth of the patients in the trials were in the acute stage, but their death rate was cut significantly when the vaccines were used.

Vaccines were not the only treatments for these patients either. The doctors had been experimenting with vitamin B injections and “the Bulgarian treatment,” which had showed some success abroad and used the roots of the belladonna plant grown in Bulgaria. The treatments gave relief to patients at times, although it’s not known if it was a psychosomatic response or a real one.

In chronic cases, the vaccines were showing mixed results. Still, the need for a vaccine was becoming desperate. The chronic symptoms of epidemic encephalitis had been appearing in greater numbers, just when the doctors were trying to get a handle on the epidemic itself. Cases like Rosie’s, where there was a severe personality change, were more common among children, but by far the most common chronic effect of encephalitis lethargica was Parkinson’s disease. The decline of these patients was inevitable and progressive. Without some type of vaccine or treatment, these patients—thousands of them—would slowly freeze into an immobile state. Since they were unable to communicate, care for themselves, feed themselves, or even walk, the only places they could go would be mental institutions. And so by 1930, there were waiting lists for the vaccine.