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"The Why"Is there anyone in your life who suffers from "chronic fatigue syndrome"? If there is, you might be interested in the speech I gave in London this spring on the subject. Derived in part from my years of reporting on this subject for my book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, my speech, "The Why," seeks to answer a number of questions about this malady. Those questions range from why the Centers for Disease Control renamed the disease in 1988 with a non-medical and hostility-inducing name (it's real name is myalgic encephalomyelitis), and why patients have been disregarded as people with personality disorders and an inability to handle stress, instead of being recognized as profoundly ill. At least a million American adults and children suffer in relative silence from this disease, which has been shown to lead, in many cases, to cancer and fatal heart complications and is as disabling or more disabling than multiple sclerosis, end-stage heart disease and end-stage AIDS. In The Why, I explain why the U.S. government has failed to undertake any comprehensive program of biological research or epidemiology that would bring the medical establishment closer to a cure or even an effective therapy. "Off with their heads!" Conference photographs (C) copyright 2009 by Regina Clos The Why, a speech in London
Copyright (c) 2009 by Hillary Johnson; All Rights Reserved Not to be reproduced without the permission of the author. I am flattered to have been asked to speak here tonight in the beautiful city of London by Invest in M.E. It’s an honor to be with this very special international audience on English ground where investigators like Sir Donald Acheson, John Richardson, Melvin Ramsay, J. Gordon Parish, Malcolm Hooper—and many others—have written, and many are still writing, a chapter in medical history that will stand for the ages. The clinician Sir William Osler wrote, “..in the faculty of observation, the Greeks were our masters-- we must return to their methods if progress is to be made.” And I think, in the UK, these doctors have emulated the Greeks. I’m going to be talking tonight about the uniquely ambitious American institution, the U.S. Centers for Disease Control. Now, the only thing Greek about the CDC is the frat boy atmosphere I encountered when I first ventured there in 1987 as part of my reporting for my book Osler’s Web. Before I embark on my deconstruction, if you will, of the CDC’s nefarious conduct in the realm of M.E., a phenomenon that has scorched the sufferers of this disease on every continent, I would like to make a few comments about the immediate present. This pandemic, by which I mean the surge of cases that began in the early to middle 1980s, has been with us for close to a quarter of a century—a human generation. Millions around the globe are sick. I think it’s fair to say that people who suffer from this disease are collectively heartbroken. We mourn the children we were never able to have because this disease stole our youth. We mourn the loss of our most productive years. We grieve that we may miss an old age of fond memories. Some of us may have given up worrying about ourselves and can only worry about future generations. Having said this, I realize that I am here on the eve of an international medical conference that is sure to be forward looking as to science. Yet the debate in the public domain goes on. One wonders: will this disease STILL be a matter of opinion another 20 years from now? Will we open the New Scientist in the year 2030 to find an article headlined, “How People Can Think Themselves Sick?” In 1990, when American AIDS investigator Nancy Klimas declared that this disease was a form of acquired immunodeficiency. I thought—“Surely, now something will be done!” The Brahmins in academic medicine, the gatekeepers of medical opinion at medical journals and the lay press—surely now, they would rally round. And that was twenty years ago. In 1992, when Anthony Komaroff, Robert Gallo and others published their groundbreaking study of 258 patients from the outbreak in Incline Village, Nevada, and wrote in their summation, that the disease was a “chronic, immunologically mediated inflammatory process of the central nervous system,” and that the epidemiology “suggests the possibility of an infectious agent transmissible by casual contact,” I thought—well, surely, now! Seventeen years ago. In 2009, we recognize a pattern: Something just too difficult to write off is published. Proteins in spinal fluid, gray matter withering away, impaired cognition, impaired immunity, viral infection, excessive rates of b-cell lymphomas, cardiac disease—I’ll stop there. We all know how long that list is. These studies appear, they’re replicated, and they’re replicated again. There’s a great, cumulative breath-holding, the silence, we think, before the earth tips right side up. But, the moment never comes. Instead, we read, “CFS and childhood abuse, linked,” one of the CDC’s dearly-held canards that will one day be viewed as another barbarous medical artifact like the presumed link between refrigerator mothers and autism. But then, one of the points I will try to make tonight is that the CDC has never allowed science to intrude upon their agenda as regards this disease. I think it’s obvious to many of us on both sides of the Atlantic that science is not driving this debate. There was enough science twenty-five years ago to make this disease a matter of profound concern and a priority area of investigation. When you strip away the details—the diagnostic codes, the devastating court rulings, the CDC’s weird definitions that have medicalized the condition “fatigue” and have broken it into fuzzy little categories, the bizarre-seeming personalities of these denialists—when you strip away the collusion of the media, and all the other collusions we know about—and look at this as if from one-hundred miles above the earth--the simplest of questions inevitably arises: WHY? Conspiracy? Incompetence? Sexism? The rise of a Fascistic 21st Century Eugenics movement? Which leads me to my first point tonight: I would like to examine the “Why.” Next, I would like to talk about the harm the CDC has done in the last 25 years—one human generation. Third, I would like to address the present—the contemporary, Post-Osler’s Web CDC. And in my summary, I would like to make a few proposals. To quote our very cool American president, Barack Obama, “It’s not enough to change the players—you’ve got to change the game.” And I’ll propose a few game changers. Many, including myself, have sought to answer that big “Why” by searching for precedents. We’ve sought to intellectualize this phenomenon by looking to medical history. Multiple sclerosis— only fully legitimized for many sufferers by the appearance of the MRI brain scan in 1985, after which, patients—women—started being released from psych wards. H. Pylori---and—another example—AIDS, in 1984 described in the medical literature as a constellation of signs and symptoms caused by the “stress” being gay. But I think we have entered a new landscape of denialism that is unlike the examples I just named, that is more complicated than a refusal to look at the scientific evidence or doctors behaving badly. There are two American federal health agencies that might reasonably have been expected to deal with M.E. One is the National Institutes of Health in Washington, DC. This agency conducts basic and applied research and doles out 90 percent of the money for bio-medical research in academia in the U.S. This agency has essentially refused to fund research in the field of M.E. and, as a result, has driven countless venerable scientists and investigators from this field. This is a big story, but it’s not our story tonight. The other agency is the Centers for Disease Control, in theory responsible for preventing and controlling the spread of infectious diseases in the U.S. and around the world. This agency has had some successes. Influenza is one example. But historically the CDC does an abysmal job of identifying new and emerging diseases. The agency’s only possible contribution might have been surveillance, or investigations of clusters, but that was something it obstinately refused to do even after numerous demands by Congress in the 1980s and 1990s. Now, primarily as a result of billions of dollars in AIDS, influenza and bioterrorism funding in the last two decades, the agency has grown and prospered tremendously. But as we will see its scientific reputation has suffered setbacks and been tarnished in myriad ways. Morale at the agency is described in countless news stories on the subject as “low.” In the case of “CFS,” the agency’s science continues to be flimsy and desperate. I suspect the best scientists at CDC are mortified the agency has been reduced to researching the modern hysteria. And it seems apparent that at this late date, lacking any hard scientific data, the agency is simply working to market the phantom disease ginned up at the CDC in 1988, called “chronic fatigue syndrome”—a brand that is today analogous to a corporate franchise, not unlike Coca Cola or Kentucky Fried Chicken. In 2006, for example, the agency’s sleek National Center for Health Marketing paid the largest patient advocacy group in the U.S. $4.5 million to help the agency “brand” the name CFS into the public consciousness. The precise contractual language between the agency and this organization was, “a project that utilizes integrated marketing strategies” end-quote, to shove the agency’s propaganda about this disease—it’s definition, prevalence estimates, its fraudulent science—down the throats of doctors, medical schools and the general public. My point here is that it’s a mistake to think of the CDC as purely a scientific institution. As regards this disease, the CDC is a political organization that calls what it does science, and gets away with it. This disease was never seen as a scientific problem. It was, rather, a political liability requiring scrupulous management. And in the last 25 years, all the techniques and strategies of sophisticated corporate governance--staying on point, controlling the message, seeking ways to retain it’s position as the “thought leader,” as the agency now refers to itself in the realm of CFS, has become a not insignificant portion of the business conducted at the agency. I recently came across a quote from one of your own, E.G. Dowsett: She writes, with great insight, “The current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague ‘fatigue’ entities [appears to be] more of a marketing exercise than a rational basis for essential international research.” The philosopher Thomas Kuhn wrote about scientific controversies that result in scientific revolutions that produce paradigm changes. And boy do we need a paradigm change at the CDC! But I am not expecting one any time soon. Kuhn was writing in 1962 about scientists who act like scientists. He could hardly have foreseen an age in which a government science bureaucracy would aver science in favor of sophisticated corporate techniques to protect itself from assaults on its credibility and to perpetuate its theories as if marketing a consumer product. The agency blew its first effort in M.E. with a botched investigation of the Lake Tahoe epidemic in 1985. Instead of making a quick correction after its initial mistake, the agency moved into damage control mode, where it is still stuck twenty-four years later --like some heavy vehicle fallen into a deep crater. I sometimes think the way the CDC has handled this disease would make a great case study for a business school seminar. The essential question would be: who benefited from the strategies undertaken? And the answers would be, in this order, disability insurers, a central government relieved of the costs of research, and individual scientists and bureaucrats at the CDC who used what little research money there was for their own purposes—travel, new computers, new office furniture, pet projects—and hung on to their jobs by lying to Congress about their progress in the disease. Another constituency who has benefited almost beyond imagining: psychiatrists. Staff at CDC were not the first investigators to place M.E. in the category of psychiatric disease, but they have the loudest voice and the biggest, most reverential audience, thanks to their marketing divisions however ill-deserved. You could say the playing field was a level one before 1988. Once the CDC picked sides, however, the game was over. One reviewer of my book noted that –quote--the “CDC comes off as a bungling, self-serving governmental agency—not the sinister generator of nefarious plots”—unquote. In the decade I spent researching my book--that was indeed my view. I had met and interacted with all the early players who laid the groundwork for what would become the CDC’s intractable policy in the years ahead. I really did see them as quite ridiculous. I scoffed at all the conspiracy theorists of the era. If only they knew how dumb these people are, I would think to myself. I’ve changed my mind. Conspiracy isn’t the appropriate word because it implies some master plan was in place from the start. There was no master plan. But one underestimates the CDC at one’s peril. Even after a highly publicized book like Osler’s Web, which pulled back a veil on corruption and criminal activity around this disease, resulting in two federal oversight investigations and ending with the director stepping down in 1998. And even after 5,000 papers in the medical literature have been published, proving this disease is a bio-medical nightmare—the agency’s hegemony in this disease, its ability to somehow trounce every scientific advance and land on top as the self-described “thought leader” in this field— remains unchallenged. Look at what they’ve accomplished: They erased one disease, and invented another. They fostered successive definitions to bolster their phantom disease, spreading confusion and doubt in the medical and research communities world wide. Their so-called “research,” reluctantly performed, was little more than propaganda, piped over loudspeakers from their bully pulpit, to reinforce their authority. And finally—world domination achieved—they have fractured their first invention, “CFS,” into multiple diseases, or “subtypes” with multiple causes, none of them physical. As a result, after twenty-five years of endless human interest stories about individual patients, very few people know much about M.E. or are even interested in it. Twenty-five hundred people signed a letter sent to the United Kingdom’s chief medical officer, urging him to attend the medical conference tomorrow. And yet, he is not coming. A quarter of a million Britons with this disease, 30,000 of them children—thirty-thousand children with this terrible disease—he is a doctor, and he chooses not to accept the invitation. Now to my Second Point, the harm done by the agency. I would like to parse the CDC’s harm in this field into three parts, beginning with the introduction of a bogus clinical entity, “CFS.” I’ll give this the most attention because I think perhaps Europeans may not know very much about how this entity came into being. I’ll also address the successive definitions the agency has used to bolster its phantom creation, definitions that have caused chaos from Atlanta to New Zealand and points in between. Finally, I will highlight aspects of the agency’s own research to demonstrate the craven political nature of its agenda. And then we’ll talk about what might be done to end what is an international tyranny. The Agency’s Roll Out of its Phantom Disease The CDC is the only government agency in the U.S. that is not in or even near Washington, DC. It’s based in Atlanta, Georgia, because it began in the 1930s as a small field station of the public health service, its purpose to control mosquitoes and malaria at army bases. Possibly because of its geographical separation from the seat of government in the U.S., CDC has developed over the decades into a clannish agency with a renegade streak. As an institution, it is recalcitrant—it doesn’t like to be told what to do. I mention this quality—a kind of an institutional personality disorder—because it might make the agency’s behavior in my little narrative tonight somewhat more comprehensible. When I began my visits to the CDC in 1987, I was surprised at how down- and-out this world-famous agency seemed. The buildings were ramshackle and the labs were cramped; the lab coats, hanging on racks in the corridors for lack of storage space, were gray and threadbare at the wrists. Tissue samples dating back decades were being stored in freezers lined up like so many coffins in low-lit corridors. Early on I encountered a young man at CDC named Gary Holmes, a recent med school grad. In order to forestall becoming a doctor—the idea of being on call filled him with dread—Holmes had signed up for the CDC’s Epidemic Intelligence Service. The EIS, you should know, is touted by the CDC as an ace cadre of brilliant young men and women eager to bust out of the confines of Atlanta and pounce on outbreaks of infectious diseases whether in the U.S or the jungles of Borneo. In the autumn of 1985, after a mere four months in Atlanta, Gary Holmes was one of two EIS officers sent out to investigate an outbreak of disease in Incline Village, Nevada, which had been reported to the agency by a local doctor, Dan Peterson. My day-by-day documentation of what transpired when Gary Holmes and his senior partner Jon Kaplan arrived in Nevada appears early on in my book Osler’s Web and the excerpt is on my website in its entirety. It’s a unique account, one that has become part of the lore of this disease, and whether or not you’ve read the book, you may have a sense of what happened there. And if Dr. Dan Peterson is in the audience, please forgive me if I am about to cause you to have a post-traumatic stress incident. For ten days, two investigators from Atlanta, who were clearly greatly more interested in hiking the rugged mountains around Lake Tahoe and jogging along the beach than talking to patients—struggled to make sense of what Dan Peterson and his equally brilliant partner Paul Cheney were trying to convey to them: the outlines of a disease that turned people into ghosts of their former selves. The doctors described clusters within clusters—among casino workers—black jack dealers—high-school English and algebra teachers—a middle-school girls’ basketball team. Multi-millionaire retirees from California; an elderly bank teller; a motorcycle gang member. The Nevada doctors had already used the best technologies of the day—brain scans, lymphocyte phenotyping, and more—but they were still unsure about the nature or the cause of this strange sickness. Three hundred people were sick, but Holmes and Kaplan examined fewer than ten. They remained aloof, even hostile. In the end, they were desperate to leave, to get back to the safety of the House, as the Atlanta headquarters are known. The senior partner, Jon Kaplan, bailed on this mystery malady the minute he returned to the CDC. Holmes, who had no tenure, was put in charge of coordinating the agency’s response to what was by then a full-court press by the media. This became pattern at the agency—give the least experienced person you can find responsibility for the disease, someone easily cowed—then pull the strings from above. In his new position as press agent, Holmes suggested to journalists that two doctors in Nevada had simply worked themselves into a frenzy; for extra measure, he suggested they were seeking publicity. Science? No. Politics? Yes. The media glare continued. Given the imperative to protect its reputation, its brand, if you will, doing nothing was not an option at CDC, a hard reality that led, in 1988 to the Annals of Internal Medicine article, the agency’s roll out of a new name. And—with the first U.S. government issued diagnostic criteria, the “Holmes” criteria—a brand new disease! To derive both the criteria and the name, Holmes engaged in correspondence with about 16 doctors around the country, most of whom had either seen no patients with the disease Peterson and Cheney had described, or had seen a very few. Holmes studiously avoided seeking assistance from the two clinicians best able to relay the specifics of this disease, a pattern that was to continue in the years ahead, when the CDC kept at arms’ length doctors who actually interacted with patients. Such doctors were, in agency speak, “contaminated.” In other words, if you, as a physician took this disease seriously, or saw patients, you could not be trusted or involved in any facet of CDC investigation of it because you were thought to be biased in favor of the disease existing. Again: Science? In a letter to Harvard’s Anthony Komaroff, Holmes sought ideas for a name to apply to what the agency was now officially calling a syndrome. “Names we feel to be descriptive but not overly specific include: Myalgic encephalomeylitis, neuromyasthenia, chronic mononucleosis-like syndrome, chronic fatigue syndrome, postviral fatigue syndrome—but feel free to add your own ideas,” Holmes wrote. James Jones, then a practicing doctor but today a member of the CFS research group at CDC, responded to Holmes’s query in this way, “Myalgic encephalomyelitis has a very specific connotation and, therefore, should be excluded at this time… the term chronic fatigue syndrome becomes attractive.” Another investigator said, “I prefer the term “chronic fatigue syndrome” over “chronic mononucleosis” because the latter implies an infectious etiology.” And in every case, that was the crux: these collaborators voiced their antipathy toward lending the disease a presumed infectious etiology. The public needed a big fat tranquilizing dart. This was crisis management, remember? “CFS” soon emerged as the favorite. Defending the agency’s choice to a large patient group, Holmes wrote: “We believe that the use of such names as neuromyasthenia and myalgic encephalomyelitis are overly complicated and too confusing for many nonmedical persons.” Moreover, he continued, the name CFS, “does not imply a specific association with any known etiologic agent.” Are we talking science? No—We’re talking public relations; crisis management; branding; getting out in front of your competitors—in this case, doctors who were better informed, large patient organizations who were better informed; doctors and academics in other countries who were taking the disease seriously. In any event, M.E. was out, and “CFS” was in, and rapidly embraced round the world, and with its invention, the CDC effectively declared war on sufferers of this disease. Australia was the first domino to fall, that year adopting the phrase and today no longer recognizing the term M.E. as a discrete entity. I will just note that your denialist-in-chief, Simon Wesseley, couldn’t wait to get on the CDC bandwagon, writing to Gary Holmes soon after the case definition was published. “…our thinking is that CFS is going to be very difficult to separate from affective disorder,” he wrote. One can almost imagine him rubbing his hands together in sweet anticipation. The Agency’s successive definitions The agency’s second major area of harm to patients arrived in the form of its successive definitions. As my Canadian friend and M.E. expert Dr. Byron Hyde has said, the CDC’s handiwork in the realm of definitions “had to be one of the most curious inventions of American scientific imperialism that one could imagine.” By 1993, the Holmes’ criteria had become one of the most cited papers in clinical medicine. Holmes had left the agency by then. If you care, he is currently a doctor at a community hospital in Fort Hood, Texas and has not published again, on this disease or any other. In 1994, another hapless EIS officer named Keiji Fukuda lent his name to a second consensus definition. With definition number two, the agency continued on its path away from clinical reality toward fantasy, from science toward navel-gazing. Even Bill Reeves, the chief of the CFS program at the agency for the last 17 years, admitted later that the group drawing up the second definition was little more than “a bunch of guys sitting around smoking cigars—well, it was the CDC, so it wasn’t cigars,” he added. And, a note about Fukuda, who is today, of all things, the deputy director of the World Health Organization. Keiji Fukuda is the living, breathing exception to the rule that CFS is bad for your career! I’ll just add that the New York Times published a profile of Fukuda four years ago. He was by then heading up the influenza program at CDC. The Times noted that the scientist had begun his career at the agency studying chronic fatigue syndrome, and added, “This was fascinating work, but,” the paper noted, “Fukuda’s primary interest was in disease control.” By 2000, the agency decided it would create yet another definition, it’s third. If the introduction of the name “chronic fatigue syndrome” was a declaration of war, patients and their advocates in and out of science rightly see this so-called empiric definition as Armageddon. Definition number three was stitched together in the usual Frankenstein-style, this time in consultation with an “International CFS Study Group”-- most of them psychiatrists. Those involved sought to find screening instruments that could be used to cull “CFS” sufferers from the rest of humanity. Well, of course. The agency could hardly retreat from its position that there are no “objective” markers in this disease. They couldn’t suggest using screening instruments like brain scans, or natural killer cell deficiencies, or cytokine levels, or viral titers—because they were still insisting that if you actually found anything wrong with people, then they didn’t have “CFS.” What they came up with was something called SPHERE, short for the Somatic and Psychological Health Report. The SPHERE program was developed by Australian psychiatrist Ian Hickie in 1997 to assist medical practitioners to identify mental illness using a questionnaire filled out in the doctor's waiting room. A study of 46,000 patients screened with the SPHERE led to the headline in the Sydney Morning Herald on the 16th of July in 2001: "Six in 10 GP patients have mental illness.” And, indeed, the latest so-called empiric definition has formalized a quite bizarre new category in psychiatry, wherein some great swathe of the general public is unwell with either chronic fatigue, or chronic fatigue syndrome, or idiopathic fatigue. The CDC has declared fatigue to be a disease. Where did M.E. go? I can only say that it hasn’t been seen for a very long time. With its latest definition, the agency has created a vast canvas upon which psychiatrists and psychiatrist-wannabes can endlessly doodle. We see these papers almost daily from psychiatric investigators all over the world, especially in the UK, Atlanta, the Netherlands and elsewhere—investigators who twist themselves into knots trying to pin the cause of what they’re calling “CFS” or, alternatively, “fatigue” on bad relationships, personality disorders, lousy childhoods, genetic pre-disposations to stress overload, and so on ad nauseum. Which leads me to the CDC’s third area of harm: Research. For many years after the Tahoe investigation, a well-supervised Gary Holmes wrote letters to senators and congress people promising the world—patient registries, tissue sample banks, a physician reporting system, surveillance. And every spring the agency sent its leaders to Capitol Hill to testify to Congress about the rapid progress their researchers were making in the disease. But the fact is, they were making no progress and doing no research. I call this the agency’s Rorshach era because one of Gary Holmes’ supervisors fondest desire was to administer Rorschach tests to CFS patients. Cooler heads at the agency persuaded him that these relics from the 1920s weren’t considered valid evidence in court cases. It’s true that a CFS steering committee convened monthly, but according to an eyewitness, these sessions devolved into something very close to late-night college bull sessions filled with hilarity and occasionally, hostility, lacking only the beer and marijuana. Occasionally the agency would direct energy into attacking research that seemed to powerfully legitimize this disease--because in keeping with their business model, they had to protect their brand, “CFS,” and promote their authority over the authority of non-agency scientists. In 1992 for instance, when Anthony Komaroff published his watershed paper suggesting that what the agency had named CFS was actually an infectious disease of the central nervous system, William Reeves nearly lost his mind. What could be more embarrassing to the CDC than if the opinion makers in the medical community actually took this paper seriously? Imagine the costs to the agency—in terms of money and its international reputation—should it be forced to admit it had been wrong about Tahoe, wrong about everything having to do with this disease? The next issue of Annals contained a letter from Bill Reeves and colleagues that lambasted not only every single major finding described in the paper, but the malady Komaroff et al had described. “We conclude {that} the disease (Komaroff) and co-workers {have} described is not the chronic fatigue syndrome or any other clinical entity.” One heard in this letter the implicit howl of outrage: how dare anyone contradict the CDC! And also: To hell with scientific discourse--we need to annihilate the competition, the boys from Harvard, not to mention the clinicians named on this paper who had examined and studied, by then, thousands of patients. Soon after, the CDC went on another search and destroy mission when Elaine DeFreitas, a microbiologist at the Wistar Institute in Philadelphia, reported she had found fragments of a novel retrovirus in patients and their close contacts, but not in controls. A third of her patient samples came from children. DeFreitas published her data in the Proceedings of the National Academy of Science and presented at a major neurological conference in Japan with her collaborators Paul Cheney and David Bell. Imagine how the CDC must have felt when DeFreitas’s finding were reported in Newsweek. Talk about a game changer—talk about embarrassing! It was Tahoe all over again, they had to mobilize, they had to respond. The agency tried to replicate DeFreitas’ findings and failed. Nevermind that scientists in Atlanta refused to follow DeFreitas’ exacting protocols, worked out over a period of four years; or that the blood samples the agency was using became contaminated with a mouse retrovirus during the experiments; or that the number two at the agency, the deputy director, shut the investigation down with a, “That’s it boys and girls,” before the agency scientists involved believed they had had a chance to explore the finding fully. Science? No. Politics? yes. Tellingly, the agency chose to publish its failure to replicate DeFreitas’ retrovirus finding in not one, but three different medical journals. As they say, “It’s not enough to wound the lion, you must kill it.” In addition, Brian Mahy, Bill Reeves’ boss at the time, wrote DeFreitas’ boss at the Wistar Institute and suggested she be fired; I have the letter. Again, a pattern in Atlanta: whoever challenges you, whoever threatens you with exposure, must be destroyed. Destroy the message and the messenger. During this ten-year period when they were stifling real science rather than investigating CFS, scientists in Atlanta were enjoying the “goose that laid the golden egg,” as one agency scientist described the money coming into the agency earmarked for CFS research. Corporate graft was another way in which agency staff distinguished themselves from real scientists and behaved like corporate gangsters. They stocked their labs with reagents even though they were conducting no lab research; they charged made-up expenses and personal travel to the CFS slush fund. My best guess is that between 1987 and 1997 at least $150 million was stolen, accomplished with the blessing of the second in command at the agency, the deputy director, as well as the senior accounting executives. The whistleblower who took me into his confidence over this fiasco was an epidemiologist named Walter Gunn. Over three years Gunn and I met in darkened hotel rooms and spoke in code on the telephone, which he feared might be bugged on his end. He was the principal investigator into CFS at the time, and he pleaded with his colleagues, “If you don’t believe it’s a real disease, then don’t take the money!” But William Reeves, whom Gunn once described as the “biggest enemy of this disease” at the CDC, and others, were intractable. Gunn went to the senior man at the agency—the deputy director. He took the problem “outside the division,” as he said, a very serious move for him because he had been, until the advent of CFS, a loyal company man. He loved the CDC. The deputy director told Gunn the problem would be corrected, but within an hour of leaving the deputy director’s office, Gunn’s key card was reprogrammed to prevent him from entering the labs where, for 20 years, he had enjoyed free access. Fearing he would be fired and be left without a pension, Gunn took early retirement from the agency leaving the CFS program in the hands of Bill Reeves. Now, aside from stem cell research and abortion, U.S. lawmakers aren’t particularly interested in biomedical controversies. As I was told again and again during my interviews with members of Congress on this matter, they do not go after the agency for its scientific opinions. But, like citizens of the UK, they do get fired up when taxpayer dollars are stolen. Thus, two federal oversight investigations were conducted over the next two years, and in each case, the investigators reiterated the truth of the charges made in Osler’s Web. Reeves invoked protection under the Federal Whistleblower Act, which in theory encourages people in possession of information about malfeasance in government to step forward without fear. That was in 1998, so Bill’s been in the CFS business for quite some time now. Unfortunately, rather than moving the CFS investigation out of the CDC and demanding that the National Institutes of Health start funding serious scientists in academia and elsewhere, Congress simply asked, once more, that the CDC conduct research on the disease. No question—CDC was chastened by the scandal. The crisis management approach to this epidemic stayed the same, but the tone, the language, did change. Agency employees realized they couldn’t make jokes about the disease in public anymore. Compassion was the new stance. “WE CARE” was the new message. Aided by its now–very-large marketing divisions, the CDC found a politically correct mantra to address the problem publicly. And it was this: The “illness”—don’t dare call it a disease—“posed a dilemma for patients and their families.” That’s on their website right now. Great PR wordsmithing: Convey compassion, but do not retreat from your position. With its new language, the agency continues to keep the issue of infectiousness at bay because, now, although the disease is a “dilemma” for those who have it, it’s not a problem for anyone else. Again, another big fat tranquilizing dart shot into the public’s derriere. Nevertheless, as the new century began, the CDC was going to have to start publishing some papers. And so, ladies and gentlemen, I would like to introduce you to Wild Bill Reeves, the chief of the CFS program at the CDC. In 2006, Reeves secured a post in Emory University’s school of medicine as an adjunct professor of psychiatry. All the action goes down in a little shop called the Mind Body Program, where stated interests are meditation, early life stress and chronic fatigue syndrome. The Mind-Body shop is now a CDC contractor and is helping the agency pump out paper after paper on the bio-psychiatry of CFS. As recently as May 4, Reeves and his collaborators released a paper that describes “an urgent need to address psychiatric disorders in the clinical care of CFS cases.” Given the CDC’s current estimates that nine million people have some form of CFS—well—that’s a lot of people requiring “urgent” psychiatric care. Do we really have to wonder why so many psychiatrists around the world are so darned enthusiastic about, so committed to, this area of medicine? In April of 2006—twenty-one years after the outbreak of M.E. in Lake Tahoe—the CDC orchestrated their first press conference ever on their false paradigm, “CFS,” in order to launch their new kind and caring $6 million public-awareness publicity campaign. Director Julie Gerberding, who was recently asked to step down by President Obama, flew up to the National Press Club in Washington, DC. She read her lines very well, even if most of what she said were lies. The press conference served as a platform from which to roll out the CDC’s latest theory under the rubric of genomics. Gerberding hailed the genomic findings as “The first credible evidence of a biological basis for chronic fatigue syndrome,” erasing, with one sentence, the existence of 5,000 papers in the medical literature—but, hey, that’s what good PR will buy you! Why not erase a quarter-century or more of medical history if it makes the CDC look good and you can get away with it? Now, this genomics stuff was a brand new approach by the agency. They’re not just talking mental illness, they’re talking eugenics—the idea that some people have a genetic deficit that makes them somehow less than viable than the rest of the population, that makes them behave differently. The CDC tried to give this a classy spin by calling a press conference as if they had made a scientific breakthrough in this disease akin to discovering HIV in AIDS. But there is no science here. In fact ideas like this were considered racist and classist and quackish in the 1930s—and immoral and dangerous in the 1940s, when the Nazi’s began using eugenic theories as a rationale to murder Jews. Here’s how the Associated Press interpreted the story: “Chronic fatigue syndrome appears to result from something in people’s genetic make-up that reduces their ability to deal with physical and psychological stress.” Really? How exactly does that fit with the other canard, that folks get this disease because they’re human dynamos and masters of the universe? When I asked Jonathan Kerr several months after this press conference if the agency’s genomics findings could be replicated, he burst out laughing. The answer was, of course, that they cannot be replicated. And by the way, when a reporter asked Reeves about Jonathan Kerr’s gene research, Reeves referred to Kerr’s research as “simplistic” but called the agency’s research “very complex” in contrast. Razzle dazzle. Now, philosophers and students of biological phenomena through the ages have noted that human beings may study and reveal the facts of science, but that science itself is immutable. There are not five different categories of pathogens that cause tuberculosis. There is only one. That is the immutability of science. But public opinion is very easily changed and manipulated, and that’s what the CDC has been taking advantage of for more than two decades. The scientists at the agency say they can’t find HHV-6 in this disease. That’s just ridiculous. Everyone has found HHV-6 in this disease, along with NK cell deficiencies. Why can’t the esteemed microbe hunters in Atlanta? My hunch is that they don’t want to find HHV-6 or NK cell deficiencies. They’re too invested in CFS psychiatry—or poor protoplasm—or some other intellectually indefensible theory, wherein they leverage one piece of logic-defying, anti-science science on top of another. It’s a morally corrupt Ponzi scheme that patients are forced to stare at the every morning in the mirror. And we are to believe them, when they categorically assert there is no evidence for infection or transmission? The immunology in this disease practically screams infection. Incompetence--stupidity? Or crowd control? I think the fact that children with M.E. are virtually never discussed by the CD is powerful evidence of the political nature of their agenda. Endless streams of patient advocates, parents of stricken children, and researchers have pleaded with the agency to conduct surveillance on children, to investigate cluster outbreaks among children in schools and elsewhere, and include the results in their “research.” It never happens, and, as the CDC is currently constituted, I suspect it never will. Because to even admit children get this disease puts it squarely back in the realm of an infectious malady. This agency obviously feels it can get away with defaming an entire generation of adults—two million, four million, nine million in the U.S.—whatever their latest inaccurate headcount is—to cement their standing as “thought leader.” But can they start doing the same to children? Would anyone really buy it? This was the reason Paul Cheney sought to include pediatrician David Bell in his collaboration with Elaine DeFreitas in the early 1990s—Cheney wanted blood samples from children. It was a life insurance policy for those collaborators. Cheney knew it was going to be a lot harder for the CDC to claim a slew of very young school children and their friends were mentally ill. Hate speech is intended to degrade a person or group of people based on race, gender and also including disability or any other distinction that might be considered a liability. Hate speech incites acts of discrimination against the victims of such speech. Think of all that is denied M.E. patients as a result of being characterized as malingerers, attention-seekers, neurotic and emotionally weak, or as David Bell says, “Nutballs and fruitcakes”? How did the Soviet Union discredit its dissidents? It called them mentally ill. Labeling M.E. a psychiatric disorder is a political act, a form of social violence. Once people are so labeled, their authority is stolen; their credibility destroyed, their civil rights jeopardized. Books comparing their disease to fantasies of alien abduction are taken seriously but their objections are not. CDC science is not legitimate science, it is the science of defamation, of marginalization, of disenfranchisement. It’s Nazi science, its eugenics, and it’s a disgrace. Someday, books will be written about what went wrong and why this was allowed to happen. III. Post Oser’s Web CDC—-third and final point As my last point tonight, I would like to address what I call the Post Osler’s Web CDC—the government agency-slash-corporate entity that decides what is science and what is not and backs its decisions up with marketing and public relations campaigns. This is not the worn-at-the cuffs agency I encountered in the 1980s. I think what’s most telling to me about today’s CDC is that as legitimate science moves forward, leaving the agency looking ever more out of touch to those who are well informed, the agency’s effort to control the fate of this disease grows ever more ambitious. The closer they get to being humiliated by their own corrupt history, by the lies they have told, the more aggressively they ramp up. In 2007, the agency convened a so-called Blue Ribbon Panel to discuss ways in which, going forward, the CDC could hang on to their “thought leader” status. Notes from this two day meeting don’t make for pretty reading. Among their conclusions was that, “While some panel members felt that the frequency of disease occurrence and the dearth of available treatment interventions warranted treating CFS as a public health problem, others felt that CFS is not currently seen as a priority…” Indeed. There could be no clearer declaration by this agency that it does not consider what it calls “CFS” to be a public health issue and that it has no intention of treating it as such. Instead, the panel concluded CDC should continue to work on its “strengths.” And what does the agency think its strengths are? Its definitions! That makes sense. Where have they achieved their wildest successes globally? The agency’s definitions have burnished the CDC brand in every country in the world, even if it they have wreaked havoc in the discovery process. The agency could care less that patients have drawn up petitions by the thousands begging them to quit issuing, to retract, these faulty definitions, or that every major researcher outside the CDC believes these definitions to be ridiculous. Apparently, the agency hopes that if it simply ignores the Canadian definition long enough, it will disappear into the mists of time. In addition, the Blue Ribbon Panel concluded that the CDC should use its authority to, and I’m quoting, “leverage others into collaborative relationships on a variety of issues.” Named as potential collaborators were non-profit foundations, hospitals, medical schools academic institutions and other research groups, not just in the U.S., but globally. Why does the possibility of “leveraged” collaborative relationships make me so uneasy—as does the agency’s recently stated five-year goal to use their thought leader status to create “international consensus” on their disease? First, knowing the agency as I do, I read the plan’s real intent as crushing forever all dissent on this matter so that the agency’s primacy can never be credibly questioned again. For example, there are grave concerns here and in the U.S. that the World Health Organization’s 40-years-long categorization of M.E. as a neurological disease is in jeopardy, more so than ever before. Does it surprise you to hear that the CDC functions as an advisor to WHO? In addition, there is the issue of a new draft of the fifth DSM, the diagnostic manual used to categorize psychiatric syndromes. Not surprisingly, psychiatrists are fighting a turf war over “fatigue.” If they succeed in labeling M.E. a mental disorder in the DSM, this will simply be a formalization of what has been de facto policy for a generation. But formalization has the potential to drag this battle out longer, perhaps for another generation or two. Bear in mind that one of the most important achievements of the modern gay civil rights movement was getting the mentally-ill designation removed from the DSM in 1972. Correcting the lie that M.E. has anything to do with mental illness will be an equally important moral and scientific victory. A second reason I am deeply concerned about any collaboration between extramural researchers and the CDC: I fear these associations will turn out to be a pact with the devil. To scientists who find evidence of contagion or pathogenic infection, or any evidence of disease at all, I would caution: They won’t just wound you, they’ll try to kill you. Remember that at the beginning of this speech I talked about how intransigent the CDC is and how it doesn’t like to be told what to do? I would like to highlight a chapter from the agency’s past that for me has always been a haunting echo of its present. In 1932 the U.S public health service decided to study what would happen to people infected with syphilis if they were left untreated. It didn’t seem to matter that the natural history of syphilis, a mutable disease with several stages of decline ultimately leading to death, was already known. In Tuskegee, Alabama, the prevalence of syphilis was extremely high—35 percent. Four-hundred black men were enrolled. This study progressed, eventually falling under the purview of the CDC in 1946. By 1961, the agency produced its 12th paper on the topic, titled, “The Tuskegee Study of Untreated Syphilis: The 30th Year of Observation.” It wasn’t until 1968 that a public health officer, not from the CDC, complained to the CDC about this study. The agency convened an in-house panel that overruled any objections and the Tuskegee syphilis experiment continued. Four years later, in 1972, the same dissenter sought out a reporter from the Associated Press. The story that followed caused a public outcry. Senator Ted Kennedy held hearings and in 1973 the federal government shut the Tuskegee experiment down by demanding subjects be treated for their syphilis. In 2009, millions of people have been sick for a significant portion of their lives with a severe disease that has been allowed to progress untreated and unacknowledged. A disease that has pulled them down and down into a twilight existence. Two years ago, the CDC announced a little noticed research project: the launch of a “CFS” registry in Bibb County, Georgia. The specific aim of this registry? “To follow CFS patients over time to characterize the natural history of CFS…These specific aims require inclusion of subjects in early stages of CFS—less than one year duration—who can be followed longitudinally to assess changes in their CFS symptoms.” Is “CFS” the agency’s new Tuskegee? I believe that unless we are vigilant history will see it that way. We are observing the natural history of a catastrophic disease in real time. We’ve been writing live history here, and we can’t sit around passively waiting to see how it turns out. The career quacks at the CDC have all the time and money and PR support in the world. Patients have none of those things. But patients are not entirely without resources. For one thing, we can look to the Whittemore Peterson Instititute, which thus far demonstrates no proclivity whatsoever to buy shares in the CFS industry. The other cautionary lesson of Tuskegee has to do with the agency’s renegade streak. When the CDC it gets it’s mind set on something, no matter how ill-conceived, decades may pass, and certainly extraordinary force may be required—hearings, legislation, extreme public disapprobation—before the agency changes course. And, though it’s fun for me personally, I’ve realized over the years that it’s unhelpful to demonize particular individuals or assume they are exclusively the problem. Gary Holmes and his cronies are long gone from the CDC and at 64 William Reeves can’t be far from retirement. But the little dragon they coaxed onto the public stage is ten stories tall now and breathing fire. It’s Godzilla. The problem no longer is about individuals. The agency’s pretense that M.E. is some vague emotional malady that can be sorted out by psychiatrists has settled into the institutional DNA in Atlanta; it’s generational, it’s structural. And that’s the difference between the very human drama I described in Osler’s Web, and what is occurring today. (SUMMARY) Tonight I’ve talked about the discrepancy between what we know to be real, and the fun-house mirror, false-reality the Centers for Disease Control has foisted on us. I’ve discussed at least some of the “Whys” of this phenomenon, which I think go all the way back to the agency’s failed investigation of an outbreak in Nevada. What began as crisis management--in the sense of denying the reality of that outbreak to avoid panic, or humiliation—evolved into to an obsession with preserving the reputation of what is, in effect, a corporate brand called “CFS.” Buttressed by its huge marketing divisions and public-relations specialists, the CDC today seeks to consolidate public opinion in its favor by creating an international consensus about its brand. It chooses this option rather than following its mandate—which is to prevent the spread of disease. I’ve also tried to demonstrate the ways science has been sacrificed to politics by this agency to consolidate that brand. Now: How do we change the game? Throughout this speech, you’ve heard me allude to the potentially infectious nature of this disease. I’ll add that for the past twenty years, the best scientists and doctors I’ve talked to have said this is an infectious disease. Anybody here a Pogo fan? Remember the cartoonist Walt Kelley’s famous query, “Have we met the enemy, and he is us?” Is it possible that, as patients, we have enabled the psychiatrists in the UK and the wanna-be psychiatrists at the CDC to carry on as they have because we have been more comfortable with being labeled mental patients rather than sufferers of an infectious disease? Would we really rather do cognitive behavioral therapy and graded exercise and be humiliated and impoverished for another twenty years rather than face the probability that we are carrying a pathogen that is transmissible? So, I’m putting this out there—wouldn’t we liberate researchers who are looking at this disease in a scientific way to explore this matter with greater gusto if we, as patients, would allow the possibility, indeed, probability, that we somehow “caught” this terrible disease? Could we be anymore radioactive than we already are? Diseases become real when the pathology is known. But at this late date think of all we still don’t know. Number one, what is the pathogen? And number two, perhaps the question most important to us personally: HOW is it transmitted? How can we save our lovers, our children, our friends, our siblings, our parents, our colleagues, from experiencing what we have experienced? Why aren’t we demanding to know these things? Shouldn’t we want to know? Fortunately, enlightenment is where the research at the Whittemore Peterson Institute seems to be taking us. And it’s my hope that we can look forward to—rather than fear—a day when the WPI leaves the CDC in the metaphorical dust, coughing and sputtering on the ground somewhere in backwoods of Georgia, when the cause of this disease is nailed down. For now I think all of us see this institute, or any other science-worshipping institutes that may spring up in the same mold, as potential game changers. Another potential game changer has to do with the media. The behavior of the press, which to date has played handmaiden to the CDC, is a critical piece of what has happened to us. As a journalist, I can give you my best observations and interpretations. But, a mystery to me, and a source of alienation and even loneliness, has been the conspicuous absence in this matter of the kind of people who would normally sort out the “why” of numerous ponderous and difficult issues: “Why we’re in Iraq,” “Why we torture.” Normally in our western democratic culture it is through public forums, exchanges of information and opinion, that the “why” gets worked out over time. Millions of people are sick and even dying from M.E. around the world. Where are the pundits and culture commentators whose job it is to ask tough questions, speculate, and challenge? Where are my colleagues in journalism? Why do they not ask the questions I have asked? Invest in M.E. has provided a great forum for an exchange of ideas tonight--but will it be picked up in the Times of London, or the Guardian, or the BBC? Will there be more discussion of these complex issues in other public forums? And if not, why not? I know there are patient advocates in this audience from several countries. Greetings! What are we doing wrong in our interactions with the media? I have a couple of suggestions: One is this: Putting an individual patient front and center for the media to treat as a human interest story is not going to cut it. It’s been the sole media strategy in the U.S. for 20 years and as we are aware, the plight of the M.E. afflicted has only grown worse. I can assure you: editors are dying for news, so give them something they haven’t heard before. Not the bleeding- heart stories---but politics. Specifically: scientific fraud and corruption; medical malfeasance; bogus or bias-ridden research; desperate patients fighting to get government-funded “research programs” like the CDC’s shut down. If you have a shot at media coverage—that’s what will interest editors. The CDC’s propaganda blitz, its Orwellian Newspeak, has rattled on for too many years to allow people to think critically about this disease. The press needs to be informed that most of what they think they know about the origins of this disease IS propaganda. So don’t ask for pity. Ask for justice. Don’t ask for sympathy. Demand your human rights. It’s time to acknowledge that we have a right to be angry. Again—remember this has not been about science for a very long time—it’s a political event requiring a political solution. At every opportunity, go for the political jugular. One final suggestion, which may make you wince, because it is a bleeding-heart suggestion—but hear me out. In the middle 1980s, families who had lost a relative to AIDS decided to create an AIDS memorial quilt. Everyone made a “block” and one day in 1987 they brought their quilt blocks to the mall in front of the U.S. capitol building in Washington. These panels covered a space larger than a football field. Half a million people visited the Quilt that weekend. For AIDS patients, the quilt was a game changer. There are probably one-million M.E. cases in the U.S. And there are a quarter-million or more cases in the UK, 30,000 of them children. If the parents of those children made a square and laid it down in St. James’s Park, news photos would be on the wires in a matter of hours. Those photos would say, this isn’t about one child, this is about thousands of children in England. And that might change the game, too. Thank you. |
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