Numerology, Part Two

Second in a Five Part Series

By

Hillary Johnson

Copyright 2017, All Rights Reserved

 

 

 

Number of years since Paul Cheney, M.D. took a “slew” of the pock-marked MRI brain scans of M.E. patients in Nevada to the University of California at San Diego medical center’s MRI unit.  UCSD neurologist Mark Healy commented, “Very interesting—let me show you some of mine,” and slotted a number of scans against the backlit glass.  Healy's scans, identical to Cheney’s, belonged to patients diagnosed with AIDS dementia.

 31

 

Number of years since the Centers for Disease Control published its first comments in their Morbidity and Mortality Weekly Report about an outbreak in Nevada.  Afterward, the Atlanta Journal reported, “CDC researchers said there is no conclusive evidence that CEBV (chronic Epstein-Barr virus) actually exists and a diagnosis of the disease is ‘unreliable.’”

 31

 

Number of years since Paul Cheney and Dan Peterson sent five serum samples from epidemic patients to Specialty Labs in Los Angeles to see if they were infected with HTLV-1, the first human retrovirus.  (HTLV-1 causes T-cell leukemias and chronic neurological diseases.) Four of five samples were positive; the predicted rate of HTLV-1 infection in U.S. population was .031%. When the samples were sent back a second time, all were negative and the doctors dismissed the original results as a fluke.

 32

 

Number of years since Jon Kaplan, one of two investigators sent to Nevada, told Hillary Johnson, “Good investigators are going to drift away from this disease.  On the other hand, you could end up being real famous if you find out what causes it. It’s like a high-risk investment. I’d rather plan conservatively.  I’m more interested in retroviruses.  And with retroviruses, there’s no question. It’s hot. You know they’re going to be important.  Whereas with this, you could work on this thing for a decade and end up with a total dud.”

 31

 

Number of years since the House Appropriations Subcommittee urged the NIH to “expand studies on (M.E.) to improve diagnostic techniques, develop treatment and search for an eventual cure for this disease which is affecting thousands of Americans.”  Simultaneously, Congress ordered the CDC to determine prevalence by instituting a system requiring doctors to report cases of the disease to the agency.

 31

 

Number of years since CDC principal M.E. investigator Beth Unger stated categorically that a reporting system for M.E. would “never” be instituted at the agency:

 Less than one

 

Number of years since Ferenc Jolesz, assistant professor of radiology at Harvard, evaluated MRI brain scans from Nevada (without knowing anything about the patients) and discovered that 77 percent of 114 scans showed white matter lesions, “distinctly different from (those lesions) seen in deep white matter infarcts (strokes) or multiple sclerosis.”

 30

 

Number of years since Tadao Aoki and other Japanese scientists published their paper, “Low Natural Killer Cell Syndrome: Clinical and Immunologic Features,” about a disease rising in incidence in Japan since the early 1980s.  The disease was characterized by chronic flu-like symptoms and disability, or what the Japanese characterized as “uncomfortable generalized dullness.”

 30

 

Number of years since the CDC, during consultations with a coterie of male doctors and scientists, decided to stamp the disease with a new name, “chronic fatigue syndrome,” actively rejecting myalgic encephalomyelitis. Correspondence acquired by Johnson via the Freedom of Information Act indicated that the new name arose primarily out of a concern with lending the malady any appearance of being caused by a pathogen. Only one of those involved has made a formal apology for his involvement in that catastrophic choice:  Anthony Komaroff.

 30

 

Number of years since NIH issued its first ever request for M.E. grant applications. NIH asked for proposals to conduct “epidemiologic studies…to assess the burden in the general population.” The grant language called for “expertise…in epidemiology, medicine, virology, immunology, neurology and psychiatry.”  M.E. investigators took the "RFA" seriously, but grant officer Ann Schleuderberg privately admitted the agency was responding to pressure created by publicity about the disease in high-profile magazines and activist patient organizations.

 30

 

Number of years before the NIH actually funded a grant.  (Dozens of scientific collaborative groups were turned down during this period.)

 5

 

Number of years since investigators at the University of San Diego published a paper in the Annals of Internal Medicine demonstrating that people infected with HIV are frequently mentally-impaired even before they begin to show symptoms of AIDS.  “The commonest (sic) changes detected by MRI imaging were…multiple small lesions…in the subcortical white matter.” Investigators in San Diego employed the same combination of MRI brain scans and neuropsychological IQ testing employed by the doctors in Nevada to achieve their results.

30

 

 Number of years since the New York Times published a front page story reporting that the U.S. military was removing all HIV-positive personnel from “sensitive, stressful” jobs.  “If a person’s brain is not functioning correctly,” an infectious disease specialist for the military said, “you do not want him flying high-performance aircraft, decoding sensitive messages for the president, or driving tanks in combat.”

 30

 

Number of years since the first issue of the 4-page, stapled CFIDS Chronicle was mailed to 500 people.

 31

 

Number of years since the NIH’s first M.E. grant officer, Ann Schleuderberg, visited Nevada and Pittsburgh to meet investigators who were studying, respectively, lymphocyte cell cultures in which some unknown agent turned cells into debris within five days, and epidemiologists who were mapping routes of transmission within a discrete outbreak.  Afterward, the unshakable proponent of the “waste basket” theory of M.E. said, “l will stake my children’s lives on the fact that this is not a single disease but many.” (Neither group was funded and all involved left the field eventually).

 31

 

Number of years since Anthony Komaroff presented a comprehensive lecture about M.E. at the University of Washington medical school, famous for its infectious disease department, attended by more than 500 student doctors, professors and scientists. During the Q & A session, Komaroff said, “I’ll add that several members of the medical staff in Tahoe became ill.” His words were met with a roar of sustained laughter and the rest of his sentence, “Two with primary seizures and two with ataxia,” could not be heard.

 31

 

Number of years since Philip Peterson, head of infectious disease at the county medical center in Minneapolis, opened a clinic for people with M.E. Within a week, 400 people had enrolled from Minneapolis and St. Paul. (In contrast, the entire state of Minnesota had just 350 AIDS cases at the time.) “I can’t tell you if there has been an epidemic,” Peterson said. “What I can tell you is that none of my clinic patients got ill before 1980 and most of them fell ill in 1984 or later.”  The NIH rejected Peterson’s and his colleagues’ repeated proposals for a series small grants to investigate the cause and natural history of the disease for several years until, ultimately, the clinic was closed.

 31

 

Number of years since NIH herpesvirus expert Stephen Straus addressed the 27th annual meeting of the Interscience Conference on Antimicrobial Agents and Chemotherapy on the subject of M.E.  “Ultimately, any hypothesis regarding the cause of (M.E.) must incorporate the psychopathology that accompanies and in some cases precedes it,” Straus told his influential audience.

 31

 

Number of years since National Institute of Allergy and Infectious Diseases director Anthony Fauci turned down an offer of money to study M.E. offered to him by a Senate appropriations subcommittee.  “In the absence of a breakthrough,” Fauci told legislators, “We do not know how to proceed.”

 31

 

Number of years since the first M.E. patient, Nancy Kaiser, received a new synthetic interferon with antiviral properties—ampligen—in Daniel Peterson’s office in Incline Village, NV. After three months of being infused with the drug three times a week, Kaiser’s T-cell ratios approached normalcy, her Natural Killer cell function rose and her HHV6 antibody levels dropped.  Her seizures stopped.  Her IQ rose from 88 to 118.

  31

 

Number of years since government representatives and independent doctors and scientists spent a weekend together discussing M.E. in a Newport, Rhode Island mansion.  Charles Carpenter, chief of staff of Brown University’s teaching institution Miriam Hospital and director of an M.E. clinic in that hospital, told government officials he and his colleagues at Brown believed the disease was new and was being driven by a “dominant pathogen.”  “If this had been going on in the fifties or sixties—even if it had been discarded as psychiatric—it would have been written about,” Carpenter told government officials.  “And it’s not in the literature. And that suggests there is a dominant agent that’s driving the majority of the cases.”

31