Has the U.S. government responded to the disease with the appropriate funding and research since Osler's Web was published?
Unfortunately, the primary grant support mechanism in the U.S. is the National Institutes of Health, an agency that historically does not, as a rule, fund academic research proposals into M.E. unless lip service is given to psychological sources of disease in the grant language. For most of the years since the publication of Osler's Web, the funding has hovered around $5 or $6 thousand dollars, less than virtually any known disease. Such miniscule amounts of money are known as "fairy dust" in NIH grant circles. In the early 1990s, the NIH was spending $75,000 in research for every HIV-infected American per year. NIH spending per M.E. sufferer has been estimated to be somewhere between $2 per year to $6 per year for at least two decades.
The NIH has failed to conduct any in-house studies on the disease for a quarter century--in this case, probably a blessing. However, late in 2015, the NIH director issued a press release announcing plans to undertake a small (40 patient) clinical study of patients who had been ill for less than five years, with results available in 3-5 years. NIH scientists have yet to state specific hypotheses or expected outcomes and appear to be starting at ground zero, despite the fact that 9,000 research papers on the disease have appeared in the medical literature since the early 1980s. Patients have complained that several NIH scientists involved in the study are biased and have sent petitions seeking their resignations, pleas that NIH executives have ignored.
The NIH has suggested its scientists may or may not undertake clinical trial of ampligen, a synthetic interferon of zero-to-low toxicity that has demonstrated efficacy in trials since 1991. NIH spokespeople have said NIH may (or may not) start an ampligen trial five years from now. There are no known efficacious treatments for M.E. aside from ampligen.
Anthony Fauci, director of the National Institutes of Allergy and Infectious Diseases and considered the AIDS "Czar" (he accrued hundreds of billions of dollars for his institute to develop therapies for HIV infections), Fauci is hugely popular within the AIDS community. In contrast to his service on behalf of AIDS, Fauci has taken every opportunity to bury M.E. for the last 35 years. As first reported in Osler's Web, in the early 1990s Fauci expressed his bewilderment--through the NIAID deputy director who he authorized to speak for him--that patients were distressed by psychiatric diagnoses since the stigma surrounding mental illness presumably had subsided. Fauci also accompanied Stephen Straus of the NIH clinical center to Capitol Hill to demand that Congress people quiet constituents who were flooding the NIH with letters pleading for Straus--an influential M.E. denier--to be fired. Upon Straus's death in 2007, Fauci directed that the disease be overseen by the Office of Women's Health, a tiny office with no labs or scientists, no authority to submit or fund research grants, and minimal authority within the NIH cosmos. The disease languished, unresearched and essentially buried in this bureaucrat's netherworld until 2016, when NIH announced its interest in conducting a clinical trial of patients at the agency.
What were some of the most newsworthy events described in Osler's Web?
Significant areas of original reporting involved the decision by CDC to undertake an epidemiological investigation of an outbreak in the small town of Incline Village NV in 1985 and a vivid description of the investigation itself. Osler's Web also described for the first time how and why the CDC decided to rename the disease "chronic fatigue syndrome," and the ways in which patients were stigmatized and dismissed by the medical establishment as a result. The book also reported the story of a years-long secret collaboration among two doctors and a laboratory immunologist to unearth the pathogen at the heart of the epidemic, and provided an insider's account of the CDC's refusal to follow appropriate protocols in order to attempt replication of the pathogen discovery. Woven through this story of the CDC's response to an emerging disease was Johnson's description of a decade-long scam promoted by top executives at CDC to lie to Congress about the agency's progress in the disease in order to obtain ever-larger sums of earmarked funding to pursue pet projects. This practice ended, in theory, only after Osler's Web publicized the practice and two federal investigations were concluded.
Because there has been virtually no serious journalistic oversight of the NIH or the CDC since the publication of Osler's Web, thinking people must continue to suspend judgement about anything agency representatives say in public. Reporting styles during the previous two decades have amounted to rewriting agency press releases or simply taking the agencies' at their word when the subject is M.E. Fortunately for these powerful federal agencies, sufferers themselves often have seemed gullible. Until professional reporters begin serious and aggressive inquiries into activities and internal decisions underway inside these agencies, there can be little clarity as to agency motives nor much confidence in their statements about their intentions.
Since 1984, when doctors in Incline Village, NV brought an outbreak of M.E. to the attention of the CDC, there have been six directors of the CDC, none of whom has ever publicly expressed concern about M.E. or in fact acknowledged that it exists with the exception of Julie Gerberding, who in 2006 announced to a group of thoroughly confused reporters assembled for a press conference in Washington, D.C. that "CFS" was caused by sexual abuse in childhood and a genetic inability to handle stress. The CDC study that drew these conclusions was never replicated and one British geneticist burst out laughing when Hillary Johnson asked him if it was possible to replicate the CDC study. The CDC's 2006 theory seems to have evaporated without explanation from the agency.
What were some of the "sidebars" of interest in Osler's Web?
The book alerted people with M.E. to the fact that staff at the CDC and NIH were contemptuous of the disease and its sufferers and that the latter were commonly the butt of jokes and insults on the part of scientists at both agencies.
The book revealed the egregiously dishonest methods employed by NIH to avoid funding grants, ultimately driving investigators permanently from the M.E. field, even when the grant applicants were top scientists in their respective fields. The book also described the methods employed by the NIH to prevent media coverage of NIH-sponsored colloquia about the disease.
The book described the tense debate and open quarrels among doctors and scientists that were ongoing during the 1980s and 1990s regarding the simple reality of M.E. and its origins, elucidating just how truculent and close-minded members of the medical profession could be in the face of an emerging disease.
The book had as an undercurrent to the main story lines the struggles of a nascent but aggressive patient movement of the 1980s and early 1990s. Perhaps to the surprise of young patients today, an earlier generation of sufferers and their philanthropic supporters undertook studies, fought hard and with passion to lobby Congress, and worked with the media to advance awareness of the M.E. outbreak and force a rational response by federal health agencies.
The book was the first to describe in detail the damage to the brain and resulting intellectual declines in M.E., as well as the toll these problems took upon the sense of self among those afflicted, whether children or adults. Osler's Web was the first work of journalism to firmly establish M.E. as a bona fide neurological disease.
The book covered in some depth the discovery of an emerging malady HIV scientists called "non-HIV AIDS," a disease remarkably similar if not identical to M.E. and along with the newspaper The New York Native questioned whether AIDS and M.E. were related either by symptoms or virology given the temporal relationship between the emergence of the two maladies. Osler's Web also reported that an infectious disease specialist in Atlanta presented data to CDC scientists about a new syndrome in his practice--M.E.--in 1983. At the time, he warned CDC staff that M.E. might in fact be a second epidemic of immune dysfunction arising concurrently with AIDS--or vice versa.
Osler's Web presented plentiful evidence for easy transmission of the disease and the fact that an epidemic was underway, an epidemic the government not only refused to acknowledge but took pains to hide. This continues to be the most controversial aspect of Osler's Web, and in fact the disease itself, and likely why so many in government and even self-styled patient "advocates" tried to crush the book upon its publication with ad hominem attacks upon the author and accusations of inaccuracies--though none were ever specifically cited.
Who referred to M.E. as “an infectious brain disease?”
Dr. Hillary Koprowski (1916-2013), director of the Wistar Institute in Philadelphia from 1957 to 1991 and an international expert in infectious neurological diseases such as polio and rabies. Koprowski was often affectionately blamed for the European “brain drain” of the mid-to-late 1950s, a period when many of Europe’s top scientists came to work in the United States. Many of them chose to work under Koprowski's leadership at the Wistar Institute. In the late 1940s, Koprowski developed the first live polio vaccine and later, an effective rabies vaccine. He also developed monoclonal antibodies as therapies for several diseases, including cancer.
Koprowski told Hillary Johnson in 1991 that M.E. and other emerging brain diseases such as Alzheimer’s, ALS and Parkinson’s would require their own institute at the NIH, accompanied by the kind of multi-billion dollar investments made in the 1970s in the “War on Cancer” and in drug development for AIDS two decades later.
Did the revelations reported in Osler’s Web about diversion of M.E. research money at the Centers for Disease Control result in any federal investigations?
Yes, two, both of which corroborated Hillary Johnson's reporting in Osler’s Web.
Rep. Jerrold Nadler, after reading the book in April of 1996, made a request to June Gibbs Brown, the inspector general of the Department of Health and Human Services (live link to June Gibbs Brown letter), to investigate Johnson’s charges. Gibbs Brown ordered an investigation, which confirmed the revelations in Osler’s Web.
In addition, in the spring of 1996, Congressman Nadler invited Hillary Johnson to his offices in Washington, D.C. to meet with three executives from the then-General Accounting Office (GAO), the U.S. Congress’ independent investigative arm. Nadler asked Johnson to describe to GAO officials the M.E. “slush fund” at the CDC and describe how it worked. Johnson's meeting with GAO officials in the Congressman’s office lasted three hours. Afterward, the fedderal officials asked Johnson to write a thorough description of the CDC’s activities during the late 1980s and early 1990s. Johnson complied by submitting a 12-page single-spaced letter to them soon after.
In 1998, after conducting its own independent investigation, the GAO reported its corroboration of the fiscal improprieties at CDC first recounted by Johnson in Osler’s Web in 1996.
Initially, CDC director Jeffrey Koplan defended the agency's diversion of Congressionally mandated dollars for M.E. research, telling the press that the money had been used to study "important diseases like measles, polio and HPV." Koplan qickly reversed himself, however. CDC executives promised to incorporate a new accounting system that would preclude a similar diversion of Congressional mandated funds away from specific diseases in the future. However, absent journalistic or Congressional oversight, the matter of whether the new accounting system prevented further misappropriation of funds for M.E. or whether the CDC has ended the practice of misappropriating money earmarked for specific diseases,remains unknown.
Was anyone involved with the CDC slush fund fired?
No one involved in the slush fund activity around M.E. was fired, even though knowledge of the slush fund went at least as high as the deputy director of the agency at the time, Walter Dowdle. Within two years of the publication of Osler’s Web, Brian Mahy, one of the top executives within the division that committed the theft of M.E. research funds, was promoted to head of Bio-terrorism at the agency after a vetting by the U. S. Congress. An attorney working for the congressional committee doing the vetting consulted Hillary Johnson on behalf of the committee. Over the course of several hours over two days, she described Mahy’s involvement, and that of his colleagues, in the agency’s diversion of research funds and offered to come to Washington to present her evidence for Mahy’s involvement in the scam. She did not hear from the committee’s attorney again, however, and Mahy won his promotion. One can conclude from this that the seriousness with which Congress viewed M.E. in the mid-1980s had dissipated entirely by the late 1990s.
William Reeves, known by his colleagues as “Hawkeye” for his automatic weapons fetish, was another significant player in the CDC’s slush fund given his role as principle investigator of M.E. at the agency beginning in 1992. With help from the North Carolina-based CFIDS Association of America, Reeves sought refuge from the GAO and DHHS investigation results in 1998 by appealing to North Carolina’s senator Strom Thurmond for protection from firing or prosecution by obtaining federal “whistleblower” status. Thus, the CFIDS Association, whose lobbyist at the time publicly took credit for having discovered the theft of M.E. funds at CDC, insured that Reeves, who fostered the view that M.E. was a psychological problem with is roots in “stress” or, as he preferred, the pseudo-scientific “allopathic load,” kept his iron grip on the disease—angrily dismissing all serious research into M.E.--as principle investigator for another 18 years until 2010. (Reeves died in 2012 at 67.)
How did the Centers for Disease Control respond to the publication of Osler's Web?
The CDC's then spokesman Tom Skinner told a reporter for a Birmingham, Alabama newspaper that "The CDC has not and we will not comment on Osler's Web." The CDC also turned down several requests from CNN to respond to Hillary Johnson during a lengthy interview scheduled to air in 1997 with Johnson. Informed during the 1997 interview of CDC's repeated refusals to respond to CNN's invitation to rebut Johnson's story in Osler's Web, Johnson told the CNN anchor, "Viewers of this broadcast should take a moment to ask themselves why a major federal agency like the Centers for Disease Control would refuse to send a representative to appear on air with a journalist to respond to the serious allegations she makes in her book about the CDC."
How did the National Institutes of Health respond to Osler's Web?
Like CDC, the NIH did not respond in any medium to the allegations in Osler's Web in spite of queries from reporters. An NIH epidemiologist named Paul Levine, however, did orchestrate a press release about the book. As president of what was then the American Association for Chronic Fatigue syndrome, a consortium of U.S. doctors and scientists (now the IACFS), Levine and his colleagues worked to discredit the book and its author. Their press release stated, implausibly, that "There is no epidemic" of M.E. The press release also stated, in a remarkable conclusion, that although Johnson was a skilled writer only scientists had the "right" to write about science.
Four members abstained from signing the consortium's agreement to distribute the press release: David Bell, Peter Rowe, Paul Cheney and Dan Peterson. The latter wrote to his colleagues suggesting that the publicity surrounding the publication of Osler's Web had presented their organization with an unprecedented opportunity to bring their case for M.E. to the public and suggested that the opportunity not be squandered by damning the book. He also noted that he could not in good conscience add his name to a document that claimed there had been no epidemic and added that, given his first hand experience with an outbreak in Nevada, he believed the disease was infectious. In spite of these abstentions, remaining members of the AACFS nonetheless circulated their press release widely to media. In addition, Levine spent two weeks haunting Johnson's book tour in eight major U.S. cities and Toronto, phoning into numerous radio interviews to debate Johnson on the issue of whether M.E. was an infectious disease or not, preventing discussion of important revelations in Osler's Web, such as the CDC's theft of millions of taxpayer dollars.
Interestingly, during one of myriad interviews he gave to her over a period of several years while she was writing Osler's Web, Levine told Johnson that he believed preventing public panic was paramount to his work as a government investigator. Early in the 1990s, Johnson accompanied Levine and a small group of academic and government scientists to a college town in a blighted, heavily industrialized state in the Midwest where they spent an entire day investigating a serious cluster outbreak of M.E. at a convent on the school's campus. Levine went on to document clusters of lymphoma that occurred in regions where clusters of M.E. also had occurred.
The press release stating that Osler's Web had falsely reported an epidemic and that journalists did not have the "right" to write about science remained prominently on the ACFS website, and then the IACFS website, for the next fourteen years. Paul Levine is currently a Research Professor of Epidemiology at the University of Nebraska Medical Center and has published three papers on inflammatory breast cancer since 2012.
How did the CFIDS Association of America, the richest patient organization of the era, respond to Osler’s Web?
Within a day of its publication, the CFIDS Association, under the direction of Kim Kenney, sought to derail the book’s credibility and legitimacy in every forum available to the organization, from publishing a negative response to an otherwise positive review of Osler’s Web in the The New York Times, to orchestrating a “truth squad” to trail Hillary Johnson on her book tour and disrupt her press interviews, to castigating the book in their monthly “Chronicle,” to orchestrating a full-frontal attack on the book by several prominent M.E. scientists of the era who were members of the former AACFS (now the IACFS).
For further elucidation of the CAA’s activities surrounding Osler’s Web, see reporter Neenyah Ostrom’s no holds barred article on the subject, which appeared in the New York Native.