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Stephen Straus


This anti-science scientist began his career as an investigator at NIAID in 1979.


• He died of an astrocytoma—a brain tumor—in May 2007. He was sixty.

• He trained in infectious diseases and initially made HSV-2, a herpes infection, his primary interest at NIH. His focus veered from HSV-2 when he got interested in "cfs,” momentarily suspected in 1983 of being caused by another herpes virus, Epstein-Barr.

• He was also the Chief of the NIAID Laboratory of Clinical Investigation. Under that program, people with challenging maladies are hospitalized at NIH and given experimental drugs in attempts to cure them.

• He was a co-author of the Center for Disease Control’s first definition in 1988, proposing the name “chronic fatigue syndrome” for the disease as well recommending that the definition exclude anyone with biological abnormalities. He also tried to keep the definition from being published in a medical journal, fearing it would fall into use as a clinical rather than a research definition; his fears were realized.


• Straus was the government scientific advisor to the Food and Drug Administration in the early 1990s when FDA officials conferred over the question of whether Ampligen should be approved for use in “cfs.” FDA has yet to formally approve Ampligen, although the agency allows very rich patients to buy the drug (at a cost of approximately $20,000 per year).

• In 1994, when asked who was providing the American military with its expertise on “cfs,” General Ronald Blanck, the military’s highest-ranking spokesman on Gulf War syndrome, responded, “Steve Straus, of course.”



There may never have been a more paranoid scientist in the government’s employ. Though he was accorded the status of national “expert” in the disease, Straus stayed away from every medical conference devoted to “cfs” throughout his entire career out of a stated fear of being attacked, verbally and even physically, by patients. Paul Cheney, who once said Straus practiced science at the "engineering level,” predicted that one day people would “dance on the graves” of Straus and his ilk—the flat-earthers.

So far, no dancing. In fact, I suspect Straus would have been astonished to know that his death incited no public commentary that I’m aware of from victims of this disease, who are also, in some part, victims of Stephen Straus.

Straus's record as chief of clinical investigation at NIAID was questionable, at best. He was chief of the program when a Hepatitis B drug trial went horribly wrong in 1993. The New York Times called the trial “among the worst catastrophes in the recent history of drug testing.” (Nov. 16, 1993) One third of fifteen patients died because the clinical investigators failed to take seriously their subjective symptoms during the trial. FDA chief David Kessler said the deaths could have been prevented had the investigators viewed their data more critically. “In retrospect, the data were there,” Kessler said. “There were five deaths here that demanded greater scrutiny.”

As for Straus’ influence and activities in “cfs,” perhaps the most outstanding aspect is that he rarely if ever supported his opinions—accepted as scientific fact by lessers as well as his superiors at NIH—with scientific data. Given his refusal to support his claims about sufferers of this disease with data, one might surmise he had no data. Nevertheless, for several years he presented grand rounds in American and European hospitals on the disease, providing thousands of doctors with the “official” U.S. government line on the disease: “cfs” was a psychiatric disorder of over-ambitious, under-achieving women. He seemed to revel in the laughs and cheers he would elicit from his audiences with lines like, “Maybe these people just need our help getting behind the wheels of their BMWs.”

(For those who want to skip the rest of the exposition and read some direct quotes from Straus, scroll down to the prose highlighted in blue.)

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As far as journalist-stenographers were concerned, from 1984 until his death in 2007, a period of twenty-three years, Straus was the scientist of record on this disease by virtue of his NIAID affiliation. Indeed, Straus was the most effective proselytizer for government health agencies of the "cfs=crazy" school of medicine. Typically, whenever someone at the New York Times wrote about “cfs,” they referenced the existing clip file and ended up calling Straus to settle the red-herring issue of “real” or “not real.” The void left by his passing, his absence from that debate, has left the paper of record, and other media, up a creek.

***

On July 28, 1988, the New York Times’ vitamin reporter, Jane Brody, quoted Straus at length on the disease. Straus explained to Brody that he and his colleagues at NIH had “demonstrated that many patients were psychologically ‘different’ long before they developed the syndrome.” The story was reprinted in metropolitan newspapers around the country and abroad.

A dentist who had been disabled by the disease wrote a letter of complaint to Straus’ boss, Anthony Fauci, asking Fauci to “take corrective action to discipline Dr. Straus and remove him from NIH at the earliest possible date.” Fauci responded with a letter citing a Connecticut doctor named Peter Manu—an M.D. with a rapacious desire for money and media attention and a champion, like Straus, of the psychoneurotic theory of the disease. Fauci noted that Manu had found half of his “cfs” patients were suffering from undiagnosed mental illness and helpfully provided the journal citation. “If we can be of further service to you,” Fauci added, “please feel free to contact us. Best regards.”

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In 1989, “LIFETIME HISTORY OF PSYCHIATRIC ILLNESS IN PEOPLE WITH CHRONIC FATIGUE SYNDROME,” was the headline on a press release the NIH Fed-exd or faxed to approximately 500 reporters and news organizations around the country, including the television networks and the science and government writers for every major newspaper and wire service. The study was based on the results of a Diagnostic Interview Schedule Straus administered to 28 “cfs” patients who had come to the NIH for a trial of the anti-herpes drug Acyclovir. (Several patients in that trial, supervised by Straus, suffered kidney problems because they were not adequately hydrated.)

The “DIS” was designed to identify and quantify depression and other aspects of psychiatric health. The test was not designed to evaluate mental health in people with medical conditions. Straus’ paper describing these “psychiatric illnesses,” which included a fear of spiders and a fear of heights, was published in an obscure publication, the Journal of Clinical Psychiatry. Straus failed to use controls; the psychiatrist who administered the DIS was unblinded. Nonetheless, every metropolitan newspaper in the nation reported on the article, cribbing their headlines from the press release. Almost without exception, journalists limited their interviews to Straus. Straus' data went unexamined.

At the time, I asked the NIH press officer why NIH felt obliged to trumpet these findings, which were published in an unimportant journal and involved a sampling of 28 patients, as if they were a major breakthrough and she fell silent. “Well,” she said, after a lengthy pause, “for chronic fatigue syndrome, there aren’t that many studies that come out of the National Institutes of Health. But it’s our second most popular inquiry from the public. It’s just behind AIDS. We know there’s a lot of interest in it.”

One of the 28 participants in this trial, psychoanalyst Susan Simon, talked of suing Straus for medical malpractice. In 1993, Simon was killed instantly when a truck collided with her motorized scooter on a New York City street.

***

In 1986, Daniel Peterson, M.D., sent three patients from Nevada to be studied by Straus. Said one, “We went as a group because no one was really functioning…With three of us, you know, one could read, one could think and one could carry the bags. I felt like one of Jerry’s poster kids.” These patients underwent spinal taps, MRI brain scans, and myriad blood draws. At least one was sent home with the following diagnosis from Straus: “Neurasthenia, etiology unknown.” “They must have been looking at something,” Peterson said afterward. “But I never got anything back on those people. I don’t really know what the NIH thought.”

Also in 1986, a young woman and her mother, both ill, were invited to the NIH from Nevada. They underwent numerous tests and extensive psychiatric evaluations. Straus performed a breast exam for “cancer” on the 21-year-old woman, but not on her mother, who was in her fifties. Straus also ordered a muscle biopsy to be performed on the younger woman; Straus’s colleague left a large, jagged, “lumpy” scar on her arm, conspicuous enough that people expressed concern when they saw it. After her return to Nevada, the young woman wrote several letters to Straus asking for the results of her tests. She never received them. Straus did respond to one of her letters in this way:

“It is my belief that your illness was triggered by an acute infection whose nature is uncertain…Unfortunately, we lack an adequate understanding of the nature of the imbalances that presumably exist in your immune system that make you feel the way you do, nor do we have therapies that I feel are likely to benefit you…I apologize for the scar that remains from your muscle biopsy…Dr. Dalakas is an international expert in muscle disease and not a plastic surgeon.” (Italics mine)

Straus never published any findings related to his research on Nevada patients, except to report, in the context of a broad overview of the disease in 1988, that he had been unable to find the tiny brain lesions using MRI scans in the brains of “most” Nevadans.

***

May the disser-in-chief, the great defamer, and one of the most unexpurgated sexists in the federal science establishment, rest in peace.


And now, I’ll let Straus speak for himself.

"The demography of this syndrome reflects an excessive risk for educated adult white women. This may reflect either a bias toward the cohort of sufferers who can best afford a sophisticated medical evaluation or some unique constitutional frailty of such individuals. Most patients with this syndrome report excellent prior health. Some had engaged in competitive sports or at least aggressively maintained physical conditioning. A less casual appraisal, however, often uncovers histories of unachievable ambition, poor coping skills, and somatic complaints…It is difficult and at times unpleasant to address the demands of such patients or to test hypotheses as to the etiology of their woes.”

Journal of Allergy and Clinical Immunology, May 1988)


“I admitted a whole series of patients from Lake Tahoe to my service at the NIH…[Tahoe] wasn’t an acute epidemic. Obviously, once it’s in the press everybody who’s tired comes out of the woodwork…It’s clear to me that most of the people there, whatever they had, weren’t part of an epidemic. Now, the question is, of those who were there, were they just fatigued and achey and psychoneurotic? Or was this mass hysteria? And we don’t know.”

Grand rounds, Silver Spring Hospital, Maryland. 1988


“There are those who are relatively poor and can’t work and have few support systems who write me or call me up and are quite desperate. And there are people who have extraordinary resources—very successful, accomplished individuals who feel they have a right to be seen by so-called experts—who call me up and are quite desperate. The problem is, I can’t do much for any of them…I don’t know if it’s an epidemic. What I can tell you is my phone rings off the hook [and] we get a tremendous number of letters that distract me from doing the things I’d like to do…”

Rolling Stone, 1987

“It is impossible to completely dispel the notion that the chronic fatigue syndrome represents a psychoneurotic condition. On the contrary, there are observations that support the hypothesis…Ultimately, any hypothesis regarding the cause of the chronic fatigue syndrome must incorporate the psychopathology that accompanies and, in some cases, precedes it.”

Journal of Infectious Diseases March 1988



“The large clinical practices that report in the literature that they don’t see a lot of psychiatric diagnosis [among “cfs” sufferers] can be charged with not using the kinds of techniques that psychiatrists use…Retroviruses had to be considered because this is the era of retroviruses. [But] this doesn’t make any sense because …retroviral infection…include(s) progressive hematologic, immunologic, and neurologic deficits in one mix or another, and those aren’t really prominent features of chronic fatigue syndrome…Despite the fact that [the retroviral theory] gained a certain cachet, and it made a lot of people very anxious, there’s really no good scientific merit to it…There is no current evidence for chronic infection in CFS. Therefore, broad screening of CFS patients for infections is completely unwarranted. Your patients may demand exotic screenings, but it’s only confusing.

(On immunological abnormalities in “cfs”:) “It’s fair to say that the findings in these studies are not reproducible.”

(Regarding NeruoSpect data:) “Very little cognitive impairment is actually verified [on careful testing]. Most of these kinds of studies come out of shops with no scientific method and have a lot of resonance in certain patient populations because it’s a very high-tech, very sophisticated test. And there are practice groups and little mini-institutes…around the country who advocate these kinds of things, and our patients bring in this literature saying that so-and-so in San Francisco and so-and-so in Los Angeles and so-and-so in North Carolina showed such and such. And you have to listen…but there is no sustained belief that these things are abnormal….

“Patients exacerbate things because they take multiple naps during the day and break up their rest periods and sleep periods. They stay in bed a lot. The diet and medication [with which] they attempt to control some of their other symptoms to keep them alert or awake and functional, in many cases, exacerbates sleep problems.

“To conclude, when we’re done thinking about this, this poor miserable patient is still going to end up seeing all of you to understand what it is that all the other specialists that he or she has seen over the prior years has failed to diagnose.”

From an address to the American College of Rheumatology, meeting in Minneapolis on October 23, 1994.

Paul Cheney on Straus, 1994:

“Real science is leaps of faith that have no logic…True science is filled with incongruities. And the better clinicians, trading stories and observations, are not bothered by them—unlike Straus, who becomes dysfunctional. He doesn’t know what to do. He can’t play a game filled with inconsistencies and incongruities. He plays science by the rules of the day, at the engineering level.”

From personal correspondence, July 19, 1995:

“I remain committed to helping resolve the numerous complex problems that chronic fatigue syndrome represents to its many sufferers, and foresee active involvement in the field for years to come.”

Four years later, in 1999, Straus became director of the NIH’s new division, the National Center for Complementary and Alternative Medicine (NCCAM), where he spent a ton of taxpayer money investigating fraudulent medical claims. In the press release announcing Straus' death, a colleague said, "Under his leadership, CAM research at NIH grew threefold, facilitating his vision of an evidence-based integrative approach to health care for the benefit of the public."

The same year, Straus' boss Anthony Fauci handed off "cfs" to the Office of Research on Women's Health.

In the release issued upon Straus' death, Fauci was quoted: "Steve was one of the kindest and most compassionate clinicians I have known."