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Jose Montoya and the Stanford Experience (Final Part - Four)

Hillary Johnson

A few words about Stanford University's wide-ranging influence during the nascent days of the M.E. epidemic, with a twist at story's end...

 

Chapter Five: Get out of my Clinic

Although he was thoroughly committed to AIDS research, Stanford University's influential dean of infectious diseases, Tom Merigan, made a highly consequential decision in the fall of 1986.  Merigan believed that doctors at Stanford's infectious diseases clinic needed to be freed from wasting time assessing M.E. patients. Thus, he sent a letter to hundreds of doctors in the Bay Area letting them know that suspected cases of M.E. (or chronic Epstein-Barr disease, as it was then known) would no longer be seen at Stanford.  The decision was going to have immediate consequences. During an interview with Merigan in 1987 in his office at Stanford, Merigan told me that by his own estimate, at least 100 to 250 M.E. sufferers a year had been referred to the infectious disease clinic at Stanford, a tertiary care center, since 1985. 

Merigan was eager, during this period, to avail himself of additional opportunities to convey his views about the disease to a broad audience. 

Immediately after Rolling Stonemagazine published my two-part series on the new disease in late July and early August 1987--the earliest first-person account of ME in a large circulation national magazine--Merigan was tapped by ABC to appear live on a Nightline segment on the phenomenon of the disease that aired August 10th.  At the time, Merigan had the largest single AIDS research grant in the nation from the National Institutes of Health. The show was hosted by Timothy Johnson, ABC's tele-doc of the era. Merigan explained to Nightline's sizable late-night audience that the phenomenon that was lighting up the phone lines in the major urban centers of California was "anxiety." 

"What you've got are individual people with individual problems and individual symptoms that have been kind of clustered together and forced into a cause." 

Merigan seemed almost to wink at host Johnson when he added, "People need an explanation for their---anxiety--and they will reach out for it." 

ABC's science reporter George Strait came to my home to interview me in a filmed segment for the show. After a series of questions in which he asked me to describe my experience with the disease and my reporting on the subject, he asked point blank if what I was experiencing might be psychological in nature.  I was naïve enough in mid-1987, especially coming on the heels of my already extensive reporting on the disease, to be taken aback and mentally unprepared for the question. I had always respected George Straight's reporting. When they cut the piece, Nightline producers chose to include from our 45 minute interview his question and my answer--a simple "I don't believe that." Such was the approach to journalism on this topic in that era. Some might say it hasn't changed much.

The derision and even hostility sufferers were meeting in their efforts to get help at major academic centers during the era was hardly limited to Stanford.  This was true particularly in California where the disease appeared to be rampant. Academics were adhering to the same policy, either de facto or in an official, de jure fashion as at Stanford.  Attempting to explain the phenomenon to themselves and others, they attributed the surfeit of victims to the spread of publicity rather than to a pathogen. The patients, they implied, were either hypochondriacs--"crocks" or "gomers," in medical slang, the latter an acronym for "get out of my emergency room"--or attention-seeking neurotics.  

In September 1986 UCLA's infectious disease senior faculty issued a memo about M.E. to all doctors and residents working or rotating through the medical center's infectious disease clinic.  "This perhaps nonexistent syndrome has been popularized by the media and fueled by physicians in the community who have not reviewed the data critically," they wrote, "as well as by commercial laboratories who make their money doing poorly standardized serologic tests...We are seeing several patients every week with suspected chronic EBV," the memo continued (italics added).  It advised UCLA doctors to look for anxiety and depression, as well as AIDS and chronic heart disease, in such patients instead.  The underlying message to doctors in the infectious disease clinic at UCLA seemed to be, "Make this diagnosis at your peril." 

In addition, Merigan's counterpart in Los Angeles, UCLA's chief of infectious disease William Hewitt, and two UCLA colleagues wrote a formal letter to the Los Angeles Timesstating unequivocally that the new disease was unworthy of medical attention, apparently desiring to settle a scientific matter in the court of public opinion.  The Times published the trio's angry-sounding letter as an op-ed in October 1985.

"The bottom line is that since the symptoms and signs are nonspecific, and the currently available laboratory tests are unreliable, the diagnosis of 'chronic Epstein-Barr virus syndrome' means nothing; it is a non-diagnosis," (italics added) they wrote. Rendering the diagnosis would make sufferers feel "hopeless," they continued, a feeling that "may dissuade the patient from returning to their prior lifestyle and activities." 

Any possibility that the patient had abandoned activity as a result of incapacitation rather than by free choice seemed unworthy of consideration.

Of course, contempt for M.E. patients was hardly exclusive to famous California universities. One doctor I interviewed at a major medical clinic in the Midwest during this period, the departmental chief of his medical specialty, told me M.E. was destined to be, in his exact words, "...one more fart in the history of American medicine."  He seemed unnerved when instead of enjoying his joke, my face must have registered something akin to awe. No matter how often it happened, the fact that reputable doctors at famous clinics and inside government agencies were willing to go on the record with such comments in those days was always surprising to me. 

Unlike Stanford and UCLA, the famous midwestern clinic was welcoming thousands of self-referred M.E. sufferers a year and charging them exorbitant sums to be sent on a round of visits to specialists.  Inevitably, these time-consuming and exhausting visits culiminated with an appointment in the department of psychiatry. Just as inevitably, patients were prescribed anti-depressants and told to exercise (or work on their relationships with their husbands, get over their empty-nest syndrome, re-think their perfectionism, or--well, just fill-in-the-blank). The routine was all the more egregious given the fact that during this pre-ordained process some portion of the well-paid specialists were laughing at patients behind their backs and this famous clinic was earning approximately $20,000 per M.E. patient, which turned out to be a sum in the multi-millions per year.

M.E. patients who sought either diagnosis or treatment at Stanford in the 1980s, however, were hardly better served. In 1984, film director Blake Edwards, who had been virulently ill for some two years by then, was referred to Merigan by his Los Angeles primary care doctor, the late Herb Tanney.

Tanney had been trying for some time to interest local public health officials and his fellow clinicians in what he vehemently believed was an unfolding epidemic in Los Angeles. Tanney, whose practice included numerous Hollywood "A" stars, witnessed a near-deluge of patients in his practice come down with M.E. spontaneously beginning in 1983.  By 1986, more than 150 of his patients had the disease. Few of them knew each other.

By Edwards's account, Merigan performed a superficial physical exam, drew blood and assured Edwards he would soon feel better.  Soon afterward, Tanney got a letter from Merigan alerting him that the filmmaker had mononucleosis. Mono, of course, is a disease of teenagers and Edwards was 63.  In 1986, Edwards made a widely-panned biographical movie about his nightmarish experience, "That's Life," starring Jack Lemon. Edwards suffered from M.E until his death at 88 in 2010. 

***

By their actions, it seemed that Merigan and at least one of his colleagues were working overtime to quash the notion that M.E. was real. In March of 1986, they saw an opportunity to do so aggressively by delegitimizing the famous Incline Village outbreak of '84-'85.  

That month, a patient from Incline Village, NV asked a doctor she knew in northern California to arrange an appointment at Stanford with an infectious disease specialist.  The doctor agreed to help and an appointment was scheduled for her at Stanford with infectious disease specialist Lucy Thompkins, by coincidence a former medical school classmate of Harvard ME expert Anthony Komaroff.  The patient was among the sickest in the practice of Dan Peterson and Paul Cheney in Incline Village and had fallen ill at the height of the '84-'85 outbreak there.  

Upon arriving at the stately, palm-lined Pasteur Drive, the hub of the Stanford medical center, the patient found herself directed to Merigan and a Stanford neurologist, Leslie Dorfman. Lucy Thompkins was nowhere in sight. The patient carried with her a heavy sealed manila envelope stuffed with medical records from Nevada, including MRI brain scans revealing areas of demyelination of white matter brain tissue, pre-lymphoma-like changes in her white cells and other aberrant immune system findings.

The difference is that with (the male patient), Stanford didn’t tell him that he had not been sick. They told him, ‘You had a little virus that people made way too much of.’ After all, how could they tell him he was an hysterical middle-aged-woman?”
Dan Peterson

According to the patient, neither man physically touched her or made an effort to examine her; neither expressed interest in her medical records.  When she left Stanford the envelope seal was intact.  She told me that the two men spent fifteen minutes with her. She was the first of two Incline Village patients Merigan would see. 

You know what he’ll say? He’ll say, ‘Listen, if you had shown me the objective data years ago that you’re showing me today, I would have believed you.’
-Paul Cheney

"One of them was very concerned about an abnormal MRI scan," Merigan later told me, "and as I view it, she had been kind of over-studied. She had anxiety as a triggering factor to refer her. I concluded she had a lot of anxiety and I didn't believe there was any evidence for a chronic viral infection going on in her."

Merigan's neurologist colleague Dorfman was moved to write a letter about this same patient to the editors of Science magazine.  Dorfman's letter was published in the prestigious journal in February of 1987.  The letter was one of the early volleys in the medical controversy that had begun to erupt nationally over the legitimacy of the Incline Village outbreak even before the CDC weighed in with its damning conclusions.  The CDC's report on the disease in 1988, of course, set back the discovery process for decades. 

Echoing his equivalents at UCLA, neurologist Dorfman--who had neither bothered to look at evidence of brain damage the Nevada patient carried with her nor conduct even a perfunctory neurologic exam--described what he called "chronic mononucleosis" as a "dubious diagnosis." He added, "Many of the symptoms described by the affected individuals...are familiar elements of the chronic stress syndrome so prevalent in our society. These symptoms may be expected to persist and increase when the sufferer is told they have brain damage from a mysterious viral infection...." Thus, Dorfman invented a new disease, "chronic stress syndrome," and called it "prevalent" while claiming as "dubious" a real disease that actually was prevalent.  (Dorfman refused multiple requests for an interview over a period of almost two years after his Science letter appeared.)

The other patient who traveled from Nevada was a 30-year-old man.  

"The difference is that with (the male patient)," Dan Peterson said later, "Stanford didn't tell him that he had not been sick.   They told him, 'You had a little virus that people made way too much of.'  After all, how could they tell him he was an hysterical middle-aged-woman?" 

The male patient eventually made a full recovery; the woman remained ill at the time of my interview with her in 1988.  She and her husband, who was ill as well, had by then moved from Nevada to start their lives anew in a different state.  She reported that both of them continued to have cognitive difficulties and other symptoms.

Peterson's partner Paul Cheney was less sanguine about Merigan and his assessment of Nevada outbreak patients.  "Merigan was someone we looked to for help and he turned a deaf ear. But you know what he'll say?  He'll say, 'Listen, if you had shown me the objective data years ago that you're showing me today, I would have believed you."  But, Cheney ruminated, "It was handed to him on a silver platter and he dismissed it out of hand.  It took him fifteen minutes to dismiss it."

Testament to the enormous political and strategic skills of Jose Montoya, who arrived at Stanford appearing to understand very well the unwritten rules of conduct in academic medicine--"Don't make waves"--the formerly epidemic and now endemic disease we know today as M.E. has found a home at Stanford University.  In fact, most would agree Stanford is a relative hot-bed of research and interest in M.E., a fact owed largely to Montoya.

Many doctors and patients who were in the thick of the epidemic outbreak of the 1980s, bear a burden of anger toward those men in positions ofpower and influence who caused damage to--eventually millions.  These putative experts approached the rapidly spreading disease with closed minds and steadfast, immutable certainty. When they stated their opinions on network television shows and in widely-respected medical journals as if they were reporting facts, they cemented themselves into Luddite-like postures. In crude terms, those who were their victims have wondered over time, where is their "comeuppance?"

At the moment, it seems there will be no comeuppance for most, if any. But at least one has had his mind opened and perhaps that is the best outcome anyone could expect.

On October 31, 2014, a decade after Jose Montoya saw his first M.E. patient and less than a year before the Institute of Medicine report on M.E, Tom Merigan wrote an email to Montoya. 

"Jose," he began, and went on to congratulate Montoya for "creating a group approach to CFS."  It was, Merigan continued, the "sensible way to go when the story was so unclear." (italics added)  Merigan noted that Montoya's enthusiasm and passion for teaching had resulted in his establishment of a network of colleagues and patients with whom he could perform "important research."  

Merigan is today a professor emeritus at Stanford.

For Tom Merigan, people with M.E. had gone from anxious women unworthy of doctors' time to "patients" suffering from a malady worthy of "important research."  The metamorphosis occurred over a period of thirty years.

In the history of the universe? Not even a blink.

In the lives of people suffering from M.E.?  For many, a lifetime.

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