Failure to Fund, Part Three

Hillary Johnson

In 1997, former NIH cancer epidemiologist Paul Levine took on as his patriotic duty the job of following me around on a book tour arranged by my publisher. His goal was to engage me in debates over whether ME was communicable, as in, transmitted from person to person. Levine's diversionary tactics during the course of numerous radio interviews, scheduled months in advance, allowed him to swallow whole the content of the book every time. By inserting himself into what were originally set up as one-on-one interviews rather than debates, he prevented me from talking about anything else--like what was in my book. I particularly wanted to talk about overt federal malfeasance. That malfeasance--the theft of funds for ME research, for instance--constituted the news value of Osler's Web. If Levine was on the line the public never got to hear about it. 

My publisher, Crown, was astonished, then simply disappointed, given their hope that Osler's Web might be a best-seller. They had invested heavily in the book, from its large size and elegant format, to hiring the same indexer they had used on their Pulitzer Prize-winning biography of Pablo Picasso, to a multi-city book tour. For Crown, the project soon fell into the "win some, lose some" category. Crown moved on to other books. For me, Levine’s interference was just another misery to be endured--until I could no longer endure it.  

 

The last time I heard Levine’s voice was during a live New York City radio show.  

“Do you want to see all these patients in concentration camps?” he began.

The implications of his comment suggested, as I saw it, that funding science and identifying the cause of the disease would—in Levine’s mind—result not in resolution of ME and an end to the suffering but simply a cruel incarceration of the sick.

 

Exasperated by Levine's seeming disingenuousness and his haunting of me and my book, which had gone on for over a year, I replied injudiciously, “Are you crazy?” I was aware by then that I was going to earn zero royalties on Osler’s Web. I had lived on $700 a month for nine years—and a year after publishing the book was actually poorer than I had been while writing it, something I had not thought possible. I think I had given up on the book, in truth. It was going nowhere in spite of universally good reviews. One thing I knew for certain that day: I was not going to keep playing this insulting, phony game with Levine, someone for whom I, by then, had zero respect as a scientist and human being. The host went immediately to commercial and I’ve not spoken to Levine since, a rare beneficence.

 

If the opportunity arose again, however, I would tell Levine that I would like to see everyone in the U.S. government who was participating in half-truths and cover-up by denying ME had a specific cause--including him--in a concentration camp. What I wanted to see instead was honest science and big money—AIDS money—being spent on ME. I would remind Levine that AIDS patients for a period were shunned and feared yet failed to land in concentration camps. In fact, more federal money was spent on AIDS than any other disease beginning in the 1980s and it's still the case in 2018. Indeed, Levine’s concentration camp red herring would have doomed him on a college debate team. But be warned: this was the level to which the government stooped—and I suspect will continue to stoop—to derail any rational, intelligent discussion of transmission.

***

 

I'll describe for you another, more important anecdote about Levine that lays bare the hypocrisy still in vogue among government scientists on the subject of ME. A few short years before Levine's campaign to derail Osler’s Web, a noted academic cancer epidemiologist invited me to accompany him to a convent where the disease had broken out among the adult Sisters and the college-age novitiates. Dissatisfied with the U.S. government's response to their problem, one of the enterprising senior nuns had reached out to the academic researcher for help, having read about his interest in ME. After several telephone calls in which the epidemiologist gathered information about the outbreak, he decided to make a trip to the convent to interview the nuns in person. He invited Paul Levine to join him, as well. He was hoping to get Levine--and by association, the National Cancer Institute--interested in the disease. Levine accepted his invitation.

 

I learned from Levine that day that ME-naysayer Stephen Straus of the National Institute of Allergy and Infectious Diseases (NIAID), had already interviewed some of the sick nuns. Ultimately Straus proposed some of them may have had lupus, but he ruled out ME. Forgive my sarcasm: we hear about outbreaks of lupus so often, do we not?  

 

The nuns weren’t satisfied with Straus’ dismissal. The academic researcher wasn’t having any of it, either. He had investigated another outbreak elsewhere in the country and performed a time-honored method of epidemiological analysis. His analysis demonstrated that the closer the contact, the more likely the chance of acquiring the disease. Sharing glasses and utensils raised the risk considerably; having sex with each other proved to be the highest risk of all.

***

 

The convent turned out to be a small, dilapidated-looking house, remarkable primarily for its spartan interior. Most of the young women had lived together as roommates in the tiny bedrooms upstairs. The poverty was striking. At lunch time the nuns served us sandwiches of Wonder bread, a slice of bologna and a thin swipe of Miracle Whip, accompanied by a glass of water.

 

Many of the novitiates were absent that day. They had already dropped out of college and returned to their parents in a state of total disability. I sat in on the interviews with the young women still living in the convent, all of whom were making plans to return home due to their globally disabling symptoms. The interviewees also told us about several of the novitiates who had already left, including what epidemiologists call the "index" patient, the first person to show symptoms in an outbreak. Although each young woman was interviewed separately, there was a striking consistency of symptoms and onset running through their stories that could not be ignored. There was also an indication, one that was never pursued in formal research, that degree of contact played a role in who had fallen ill. Roommates were more likely to be ill than women who did not share a room, for instance.

 

At the end of the day, the university-affiliated epidemiologist accepted a gift of homemade jam from one of the senior Sisters, but told me soon after our departure that he planned to keep the jam on his office shelf as a memento of the remarkable day we had just experienced. He had no plans to either open or eat the jam. "I wouldn't risk it," he said. “We don’t know how this is transmitted."

 

I planned to write about this day and the convent outbreak in my book, of course. Why else would I have come? The elderly Mother Superior seemed to appear out of nowhere as I was leaving, however, and insisted that I not publish anything about the outbreak, even if, as I proposed, I disguised the state, region of the country, or even the country in which the convent was situated. She was so adamant I thought she might pull a ruler from her sleeve and whip my hand had I not agreed to her demand then and there. I understood her entreaty: she did not want her humble convent to become famous for being the site of an outbreak of a disastrous disease. Among other things, it would mean the end of the enterprise and, perhaps, costly liability issues. Of course, since the novitiates had been attending a local college, likely the scourge was sending students home from campus, as well. I wish could report that I had placed a call to the student health services at the time, but the fact that I would not be reporting any part of the story in Osler's Web discouraged me. I acquiesced to the Mother Superior's request, though I still have my notes. I felt sorry for her and the convent's inhabitants. The place seemed doomed. I also believed there was an abundance of evidence in Osler’s Web to remove any doubt that ME was infectious.

 

Levine had to have at least entertained the possibility that the disease was transmissible after that day, now that he had observed an old-fashioned cluster outbreak unfolding in real time, even if he was unsure of the pathogen or how it spread. I’ll add that in the years I was working on Osler’s Web, during the course of numerous interviews, Levine was the most adamant among the many government scientists I interviewed that his top priority as a federal scientist was to alleviate or prevent “public panic.”

 

“No, it’s not,” the academic epidemiologist who had invited Levine said angrily when I repeated Levine’s comment to him later. “His job is to perform scientific research!” In reference to the scientists at CDC and NIH, he quipped, "They're politicians, not scientists."

By then, the academic researcher had investigated two cluster outbreaks and demonstrated that an infection likely was being transmitted in at least one of the outbreaks. He tried to obtain a grant from the NIH to pursue his study of the epidemiology of ME. His grant application was denied and in fact he received the worst scores of his career from reviewers. It was a story with which I was by then overly familiar. This scientist had been awarded millions of dollars over the years to study the relationship between cancer and viruses, his area of expertise. Nevertheless, NIH would not allow someone of his prestige and obvious passion near ME. He was, understandably, furious. One interpretation of the NIH's refusal to fund could be that they didn't want their precarious apple cart of mis- and disinformation upset. I wasn't surprised when he eventually abandoned ME. Given the politics of the disease, he knew he would never be funded. The government simply couldn't allow this avenue of research to be pursued. He had an income to earn, a lab to support and posts-docs to pay. He moved on to studying the relationship between Epstein-Barr virus and lymphoma for the remainder of his career.

***

At present, the NIH’s plan seems to be to continue to drag out the discovery process for several more years, spending as little as they can. The tiny study with, after two years, about six patients signed up, at the National Institute of Neurolgical Disorders and Stroke (NINDS) could take years to complete. Its arrogant-sounding scientists, who seem contemptuous of patients as a whole, seem know very little about ME and one has to wonder how much they'll find out. Important things that should have been done thirty-five years ago aren’t even being talked about: case reporting, contact tracing, state-wide and nation-wide epidemiology. NINDS chief Walter Koroshetz's recent robotic response to a request from a petition signed by fifty-thousand patients that NIH commit even a paltry $100 million to ME was an exercise in hand-waving and double-speak, a press-release-style reply to what may easily be described as a humanitarian crisis. 

Where is Congress? When will journalists give up chronicling the spiritual drama of the disease--an easy chore--and start writing about the political nature of the crimes being committed in the name of science?

 

Scientific conclaves about ME of all manner are being held all over the world, on and off government real estate, but I've personally not seen a single virologist or epidemiologist prominently featured at any of them. I would love to be wrong about this. It should be obvious by now that for me, anyway, the scientific specialties required at this juncture, or any juncture in the past, are virology and epidemiology. Those specialties will answer all the pressing questions: causation, routes of infection, who does and doesn’t have ME and, ultimately, how to fight it.

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