Anatomy of a Missed Opportunity, Part Two

Hillary Johnson

Recently, the former publisher and editor of the long-shuttered New York Native, Charles Ortleb, released on his website a Native 1996 cover story on Rep. Jerrold Nadler and the U.S. congressman's intense interest in what was then called "chronic fatigue syndrome." It brought back a tide of memories of how battered and beaten the book had been by its own constituency. Its only defender within that constituency, running counter to a tide of antagonism from every corner, was Dan Peterson, the doctor who inadvertently started a nightmare landslide of federal negligence and misdeeds after he called a friend at the CDC to seek the agency's expertise in a Nevada outbreak. 

The Native story recounts how Rep. Nadler, who read my book after its publication in March 1996, sought to push forward with a Congressional investigation of the CDC, as well as investigations of Department of Health and Human Services by both the General Accounting Office and the DHHS's inspector general.

Nadler was deeply struck by several areas of malfeasance I described in Osler's Web, especially the agency's theft and misuse of taxpayer money and the even larger issue of what amounted to a years' long cover-up of a major disease epidemic. Soon after finishing Osler's Web, Nadler wrote to Donna Shalala, President Bill Clinton's Secretary of Health urging her to investigate the charges in Osler's Web.

Nadler then stood on the House floor and read into the record his request for a Congressional investigation into the CDC's handling of the disease based on my reporting in Osler's Web.  

"Mr. Chairman," he read, "I have learned of a serious charge made by author Hillary Johnson in her book, Osler's Web, that the CDC has ignored clinical and epidemiological evidence showing that Chronic Fatigue syndrome (CFS) is a devastating infectious disease caused by a real pathogen rather than a psychosomatic illness, as the CDC has claimed. Ms. Johnson charges that researchers who share her view have been ostracized and denied federal funding.

She asserts that CFS is an immunological disease with many of the same characteristics as AIDS. She calls CFS 'HIV-negative AIDS' and reports the view of some others that HHV-6 may be a precipitating factor or co-facter in CFS and other immunological illnesses, including AIDS.

I have already contacted HHS Secretary Shalala requesting her to reply to Ms. Johnson's disturbing allegations and I now urge that Congress direct the GAO to look into this matter, as well."

Not content to stop there, Rep. Nadler wrote directly to Charles Bowsher, then the head of the GAO, asking for an investigation into my claims that the CDC failed to use the money appropriated by Congress to conduct research into ME. The GAO, which functions as congress' investigative arm, changed its name to the Government Accountability Office in 2004. A terse description of its mandate today is found on it's website: "Often called the 'congressional watchdog,' GAO investigates how the federal government spends taxpayer dollars."

Lastly, Nadler wrote to June Gibbs-Brown, inspector general of the Department of Health and Human Services.

Links to copies all of Nadler's actual letters seeking investigations based on what he read in Osler's Web are available on The Book menu tab of this website under "About the Book."

Some background on Jerrold Nadler:

Four years earlier, Nadler, a constitutional lawyer, had succeeded Democrat Ted Weiss in the House. Weiss represented the Bronx, Wall Street and New York's Upper West Side. Given his ultra-liberal constituency in New York City, Weiss believed he had an unimpeded mandate to investigate--among other matters--the CDC's early handling of the AIDS epidemic. Weiss already had held several Congressional hearings on that topic. Weiss' untimely death in 1992 from heart failure resulted in Nadler's election to succeed Weiss. 

I would learn later from Weiss' former staff members that before his death Weiss had become increasingly concerned about the Atlanta agency's handling of ME and was planning to call for investigations on that topic. 

Nadler, having inheritied Weiss' constituency, knew his voters would support an aggressive liberal agenda in all realms but especially regarding social justice issues in public health.

Soon after Osler's Web was published, I learned Nadler had read a statement on the House floor calling for an investigation into the CDC. 

I wrote to Nadler to thank him for his attention to ME and offered to help in any way I could going forward. Nadler, in turn, invited me to come to his Washington, D.C. office to meet with him and three high-level GAO executives. 

Nadler wanted the GAO to follow up on the CDC's misuse of millions of dollars of congress had given the the agency specifically to conduct research into ME, including epidemiology, a story I broke in Osler's Web. Nadler was also extremely disturbed by the possibility that the CDC was burying the existence of an infectious disease, a central message of Osler's Web. Before GAO officials arrived, Nadler and I had an animated conversation about my years covering the CDC. An hour later, the GAO officials arrived and the five of us talked for another two hours. 

At the end of the meeting, the GAO officials asked me to write a description of how the 'slush fund' at the CDC worked--who participated, who knew about it, how the money was spent, etc. I returned to New York and immediately wrote a twelve-page, single-spaced letter clarifying the details, some of which had not appeared in Osler's Web due to space restrictions, and sent it to the GAO officials. I copied Nadler, as well.

The New York Native, which closed it doors in 1997, was exceedingly unusual for being the only newspaper to assign a reporter to ME full time. Journalist Neenyah Ostrom was the paper's beat reporter on ME. During the summer of 1996 when Nadler was calling for Secretary of Health Donna Shalala and Charles Bowsher of the General Accounting Office to conduct investigations of the CDC and address the charges in Osler's Web, Ostrom did a Q&A with Nadler and his legislative aide, Neil Goldstein, that appeared in the Native. (A link to the interview appears below.)

Although I did not know it at the time of our meeting, one of the GAO executives present was also a scientist, as Nadler explains in the Native interview. This particular GAO executive drew a fine line for Nadler between Congress mandating research into searching for a specific etiology of a disease and Congress supplying money and simply asking that the money be used for research into a particular disease. 

Congress can send CDC and NIH money and hope government scientists conduct research on specific diseases that is appropriate to the disease, which is what Congress did from 1988 well into the 1990's for ME. But Congress made the faulty assumption that CDC took the disease seriously and would approach it in a reasonable scientific manner. Congress declined to direct the agency in any specific way in its ME research, other than asking on occasion that epidemiology be performed to learn how many people were sick with the disease, or in CDC-speak, to measure the 'public health burden.'

Had CDC acquiesced to the latter request the answer might have brought Congress and scientists in academia closer to a certainty that an epidemic was occurring, suggesting an infectious cause, for instance. But, As Osler's Web proved, CDC spent no money on ME research, conducted no epidemiology, in particular, and lied to Congress during appropriations subcommittee hearings every spring about it's progress in the disease in order to get more money for unrelated pet projects for at least eight years.

I learned during the nine years I worked on Osler's Web that congresspeople are uncomfortable telling government scientists what they should be studying or how they should be studying it. As one legislative aide told me at the time, "These guys (NIH-CDC scientists) go down the wrong path all the time and there's no stopping them." However, as Nadler and his aide expressed to Ostrom in her interview with them, it is possible to introduce and pass legislation to direct government scientists to pursue specific questions in scientific investigations.  

Nadler made the point in his interview with the Native that it is well within Congress' power to be more specific in its requests of CDC. Congress had the ability, Nadler said, to "mandate that [CDC] research CFS as a contagious, viral disease." He also noted that GAO had reviewed the CDC's stance on CFS and that CDC had already indicated that its scientists believed ME was a viral disease. But, in order for Nadler to introduce a bill mandating that CDC begin researching ME "as a contagious, viral disease," he would need the support of patients.

As Nadler's top aide, Neil Goldstein, told Ostrom, "The only way Congress will respond is if a constituency is developed. If there is a network out there of CFS sufferers who are willing to say to Congress 'You should be studying the fact that this is a contagious disease,' Congress will. If, on the other hand, the CFS network wants to hide the fact that CFS is an infectious disease, the other members of Congess are going to come to Congressman Nadler and say 'We don't support your bill. We're going to get roasted on this.' So the question becomes, how do we make sure the correct information gets out so that people focus on the real problem?'"

The constituency Nadler required never emerged. Instead of focusing on the "real problem," the largest patient organization in the country--the CAA and the national scientific group for ME, now the IACFS, quickly went to work to discredit Osler's Web, a disturbing tale I recounted in Part One.

Here's the link to the Native's interview with Jerrold Nadler in 1996:

These events occurred twenty-two years ago. The majority of patients who were part of the epidemic phase of ME in the 1980s and 1990s have died or will die in the coming years. Those who fell ill in this century may never understand that the tragedy that befell them had less to do with fate or the random vagaries of life than with their own government's negligence. They are also unlikely to know that there were powerful people willing to advocate on behalf of ME sufferers--specifically a highly respected House member--in the 1990s who, like Osler's Web, itself, were given the cold shoulder by influential associations purporting to represent patients.

By 1998, the Inspector General of the DHHS, June Gibbs Brown, and the GAO, each concluded their investigations of the CDC's handling of ME. In my view, the investigations were disappointingly shallow. The GAO, for instance, in spite of the clear evidence I provided that the theft of research funds began in 1988 with the first infusion of cash to the CDC and persisted at least until Osler's Web was published, a period of eight years, the GAO investigators only looked back two years. 

Gibbs-Brown's estimate of the amount of funds stolen, $13 million, was probably one-tenth of the actual sum. The CFIDS Association of America had, in the meantime, inserted itself into the process. Its leadership brought CDC's principal investigator into ME, the psycho-social proponent and loose cannon Bill "Hawkeye" Reeves, into the fray. 

Based in North Carolina, the CAA asked their senator, the right-wing, famously racist Strom Thurmond to help CAA achieve federal whistle blower status for Reeves. Thus, Reeves, who now could not be fired, positioned himself as the CDC employee who blew the whistle on his colleagues, even though my sources at CDC repeatedly described Reeves to me as "the biggest enemy of this disease at the agency." 

My primary source, in fact, the former principal ME investigator and Reeves predecessor, told me he privately pleaded with Reeves on several occasions, "If you don't believe the disease is real, then don't accept the money!" But Reeves ignored him and at times even ridiculed him. 

Knowledge of the CFS 'slush fund' went at least as high as Walter Dowdle, then the deputy director of the CDC, suggesting the most powerful people at the CDC were not only aware of but approved of the misappropriation of ME research money. When the results of these investigations were finally released and Reeves achieved his whistle blower status in 1998, the Washington Post reported the story. 

Jeffrey Koplan, the director of the CDC at the time, attempted to excuse his agency by saying the money had been used to study "more important diseases like measles and polio." Of course, polio had been virtually eradicated by then and it's hard to argue that measles is a "more important" disease than ME, given what was known already at the time about ME.

Days later, a chastened Koplan provided a muted apology to ME sufferers in the same Washington Post he had previously defended the theft of ME research funds. 

No one was ever fired from the CDC for participating in the conspiracy to defraud Congress and one of those involved, Brian Mahy, Reeve's superior, was promoted. The agency mollified Congress by promising a new accounting system had been created at the agency that would prevent similar crimes in the future. As far as I know, there has been no independent oversight of the agency's research activity in ME or probably more important its fiscal activity, since I ended my reporting for Osler's Web. When the Senate proposed to drop all money for ME research at CDC, patients and patient representatives got fired up and lobbied for that particular line item to be restored. I would have argued the money be dropped, or applied to some other disease given the agency's grievous history in ME. Recent news that CDC is being forced to drop it's infectious disease surveillance due to Trump's budget cuts does not grieve me in the slightest, knowing as I do how incompetently the agency handled the ME epidemic, a disease second only to AIDS in seriousness and--after 35 years of negligence by CDC--perhaps the most common infectious disease throughout the world. Put another way, I question whether CDC even has the right to exist at this juncture.

A year later after the Post published its reporting on the GAO investigation, Koplan was replaced as director. The Post reporter seemed entirely innocent of Reeves' history in the disease and in fact innocent of the political history of the CDC's role in the disease in general. 

Perhaps not surprisingly, the CFIDS Association of America took credit in the Post for discovering the misuse of funds and instigating the investigations. The CAA's lobbyist, Tom Sheridan, also claimed ownership of the discovery and for years used the incident on his website as an example of his accomplishments for his clients. Soon after, the CFIDS Association accepted a $4.5 million "grant" from the CDC to "brand" the name "chronic fatigue syndrome" into the public consciousness. They did so by hiring a fashion photographer to take headshots of several CFS patients and put them on posters. The posters were then sent on a traveling expedition through America's malls under the name, "The Faces of Chronic Fatigue Syndrome," apparently to prove that people with ME did not have three heads or wriggling green antennae, but in fact looked like normal humans. The irony there being that it was the CDC that fostered the notion that people with "CFS" were, even if earthlings, pretty damn weird.

At an IACFS meeting in Fort Lauderdale in 2006, CAA's president Kim Kenney spoke, followed by Tom Sheridan; they congratulated each other on exposing the theft of funds at CDC. When a microphone was made available for questions from the audience, I stood to contradict them. Sheridan promptly interrupted me and told me to sit down. A few patients in the audience began hissing at me. After the meeting, a woman who had been in the room walked toward me and with animus threw a note at me. She had written: "You obviously have no idea what it's like to live with this disease!" 

Through its collaboration with Sen. Strom Thurmond, CAA succeeded in cementing Reeves into the job of handling the highly politicized ME "problem" at CDC for the next fifteen years until he was at last removed from the position by superiors not long after the first Science paper on XMRV was published in the fall of 2009. During those years, Reeves managed to obtain a position as a professor emeritus at Emory University, next door to CDC, in the psychiatric department. In the years following, Reeves published a string of papers on ME with Emory psychiatrists as his fellow authors.

Nadler has moved on in the last twenty years. His predecessor, Ted Weiss, was known as "The conscience of the Congress" a mantel Nadler wears well, too.  

Today, Nadler is the minority leader of the House Judiciary Committee. His concerns lie with determining whether the Trump campaign colluded with Russia to rig the presidential election and matters of  obstruction of justice. Recently, with the resignation of Rep. John Conyers over allegations of sexual harassment, House democrats voted to elevate Nadler to the post of ranking Democrat on this influential committee by a large margin. Should Republicans lose their dominance in the House, Nadler will chair this committee. 

Nadler is a respected constitutional scholar. He's also a politician who has clashed with Donald Trump over Trump's bottomless real estate ambitions in New York. Personally, I've always thought he was one of the smartest members of the House of Representatives. But then, I'm biased. Nadler's recent elevation to ranking minority member of the Judiciary suggests his colleagues in the House feel much the same about him.

These days, scientists both within and without government are promising patients years of additional study before ME will be, as Solve ME likes to say, "understood, diagnosable and treatable." The government and even academic ME researchers, and certainly journalists, are acting as if little is known about ME, or as if scientists have only just begun to plumb the depths of the disease. 

Never mind that there are already thousands of papers in the medical literature describing immune and brain aberrations as well as other symptoms and abnormalities in the disease. The NIH's clinical study of forty moderately afflicted patients suggests the NIH is starting from near-zero. The fact is, much about ME has been understood for decades; experienced doctors can make the diagnosis quite easily and there are drugs available that have been shown to reverse or ameliorate the disease, Ampligen being one. 

The evidence for transmission is stronger than ever. If it weren't transmissible, why has it continued to spread? Malodorous vapors? That's how the disease might have been explained by doctors in the 1800's employing the "miasma theory" of disease, which preceded the germ theory but nevertheless continued to be viewed as legitimate well into the early 20th Century.

 Increasingly, as if to explain away the fact that the disease continues to spread, I read in government statements to the media that ME only seems more prevalent now than in the past due to better detection methods. Scientists are still claiming that about autism, too.  Will people start to believe it about ? Do they already believe it? Given CDC's year's long suggestion that the vast majority--90 percent--of patients remain undiagnosed, then "detection methods" are as bad as ever. Not to mention CDC cannot point to accurate epidemiological research about ME to present any reliable insights on the matter. 

It's certainly a politically convenient--if illogical--hypothesis to explain away a massive outbreak of disease that existed solely in small, well-contained cluster outbreaks before the early 1980s. Especially if you don't intend to do anything about this disease. Prior to 1984, there was very little in the published medical literature about ME. Before the disease broke out in the general population in tandem with AIDS, you could compare those medical professionals who were interested in ME to a kind of well-intended gentleman's club of butterfly enthusiasts. Virtually no doctors had heard of it much less seen a case in their practice.  

For those who have suffered daily with this disease for decades, the prediction of additional years of study before ME is resolved feels nearly intolerable given the many opportunities for resolution that have come and gone since the early 1980s, starting in 1985 with the CDC's investigation in Incline Village, NV and the 1996 episode described above. 

Tragic, too, that patients may be moving further from the truth and embracing unscientific narratives about what happened to them. The latest theory, that the phenomenon of ME can be chalked up to sexist doctors--when in fact it was allowed to spread as a result of a years long, quite complex institutional conspiracy at CDC and NIH--equally distracts from the seriousness of what has occurred.

In a situation as dire as ME patients find themselves in, it may be true that even a false narrative, if it persuades governments to to the right thing, is a winning narrative. But will it be shown to be the winning narrative? Time will tell. False narratives of the past--and there have been myriad false narratives--have not resulted in scientific resolution of the disease. The cause of the ME has yet to be found and the government, with all its scientists and money--$32 billion available for research at NIH alone this year--has invested almost no human or other kind of capital trying.

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