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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. (more…)

Word comes from the UK of Pamela Weston’s assisted suicide at the Dignitas clinic in Zurich, Switzerland. Weston, in a letter written before she died, described her eighteen year nightmare of M.E., which began with a flu-like malady in August, 1991.

“I can no longer write professionally any more. There is nothing else I want to do. Nothing else I can do. I am too weak, too tired.”

She described her “happy life" as a classical musician, teacher and writer up to the day she fell ill.

“…ME put a stop to all that,” she wrote.

During her 18 years of illness, years during which she experienced a decline that resulted in no fewer than four heart attacks in her final two years, she was offered little by way of treatment, what she was offered did not help, and she suffered the double insult of being caught up in a mass delusion fostered by psychiatrist-quacks in England and the U.S. that her disease was psychological.

“I’ve had a wonderful, happy life. Now it's over. What I want now is for campaigners, such as Action for M.E, to use my story to push the Government hard on medical research,” Weston wrote sometime before she took barbiturates on September 9, 2009.

***

Who is responsible for the 25-year horror movie that is the story of this disease? I’m offering, for your consideration, some of the major players in the drama, letting you know, if you didn’t know, a few of the things they said and did along the way. I offer these names with a caveat—given time and space constraints, it’s impossible to cover the waterfront, and what’s below is merely a taste of the activities these people engaged in that prevented resolution of this disease for a generation, leaving millions around the world to rot in bed for decades, or die of cancer or heart failure twenty years before their time, or choose death over life. Here, for your consideration, are some of the guilty parties. I leave any discussion of motive to the reader and will say only that although most of these people are scientists, scientific considerations have never been paramount or even apparently part of their thought processes.

Anthony Fauci

• Since 1984, director of the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH in Bethesda. Member of the National Academy of Sciences. Between 1996 and 2006, the tenth most cited AIDS-HIV researcher.

*Close friend and ardent supporter of NIAID’s Stephen Straus, the internationally influential architect of the psychoneurotic theory of “chronic fatigue syndrome." (Straus died in May 2007.)

• Considered the American “AIDS Czar” and the recipient, for his institute, of billions of dollars for AIDS research. For the year 2009, Fauci's budget was $4.7 billion.

• The person who advised NIH director Harold Varmus in 1999 to move “chronic fatigue syndrome” out of NIAID and into the dead zone of the ineffectual and unfunded Office of Research on Women’s Health at NIH, a stunningly irresponsible and cynical decision. Fauci made this move on the heels of a General Accounting Office report critical of the NIH's history in "cfs."

(more…)

I signed a book contract in the late summer of 1987 to write about the emerging disease chronic Epstein-Barr syndrome, as it was then known. My advance was a very good one--or would have been had I completed the book in the 18 month term upon which my publisher and I agreed. Remarkably, it seemed at the time, the CEO of this very large publishing company, which was about to be the target of a hostile takeover (anyone remember hostile takeovers?), had the disease himself. No doubt that is why he offered a more generous advance than several other publishers.

Later, after I was well into my research and the company was taken from him, the CEO resigned and decamped from Park Avenue to his horse farm in Virginia. We had shared a few lunches at the kind of mid-town French restaurants I would never have set foot in on my own speed. After the sale of his corporation, I never heard from him again, however. In addition, my editor suddenly stopped returning my phone calls. I assumed he was a busy person. (more…)

A contemplative blog I enjoyed; maybe you will, too.