Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jan 18, 2009.
does anyone know how hillary johnson, the author of "osler's web", recovered from CFS?
Sue, I wasn't aware that she had actually recovered... Did she recover? Regardless, it's an excellent book-- it happened to be the first book I read on CFS.
I haven't heard that she recovered-here are a couple of interview-one where she says it took her 9 years to write the book b/c she was sick, and another from 1996 where she says that she's been sick for 10 years. I hope she's one of the lucky ones who recovered though!
I've seen her writing in various places online re: CFS still-this is a really interesting article re: advocacy from 2004:
hey out of step, that is an excellent piece by hillary with excellent points thanks for pointing it out:
A few more thoughts on advocacy
By Hillary Johnson, best selling author of ‘Osler’s Web’.
4 January 2004
I’m always interested in opinions about advocacy, and so I read Craig Maupin’s piece carefully. I don’t know Maupin, nor am I familiar with his CFIDS Report. I wish him well and respect his efforts to nudge people to think more about how to do advocacy. His piece led me to feel I would like to add a few of my own opinions on advocacy, however. Based on past experience, though, I will warn that my thoughts on advocacy, expressed before in other forums, have never been wildly popular with anyone. But, I’ll just forge ahead here in the spirit of a free exchange of ideas among peers.
A bit of background: I think some may think of me as an advocate, but I am really not in the sense Craig Maupin writes about. I am in the “media” category. I’ll add that I always wrote controversial stories, from my earliest days in my profession. I was always getting my editors in trouble with the powers that be; it was a fact of my life. What saved me (and them) was that I never got the story wrong. I took a lot of pride in that. I had always felt the entire point of journalism was to lay bare the truth, however unpleasant, as a service to readers. What was the point of doing anything less? Some people have the stomach for journalism; some don’t. I was in the first category. So, to summarize, I am a journalist of more than thirty years and, as many in the U.S. know, one who spent nine years writing a book about the political/scientific landscape of an emerging pandemic.
Now, one of the greatest mysteries regarding the science of ME continues to be how or why an epidemic disease that had occurred only occasionally in isolated or “discrete” outbreaks during the first several decades of the 20<sup>th Century changed, by the early 1980s, into a full-blown pandemic. Certainly, many historians have written about the ebb and flow of epidemic diseases. All of these historians agree that for reasons still unclear, diseases come and go, raging through local or even world populations, causing widespread disease for a period of years or decades, or even centuries (some of them so encompassing they alter the social and economic landscape forever), then simply disappear, either to reappear later, or never to be seen again. So, it’s important to note that this mystery is hardly confined to ME. It applies to all infectious diseases. Another mystery of infectious diseases—why most people are likely infected with the agent of disease, but only some develop symptoms, or fall ill? These are not questions that are of particular import to the issues Craig Maupin raises, but I mention them merely as background to what I would like to say about advocacy.
I will add that in the mid-to late 1980s, new cases of ME were occurring at a rate fifteen times the attack rate of the polio epidemics of the 1950s.
I can imagine many might vehemently disagree with me, but sometimes I wonder if in fact the ME pandemic has ebbed, or is even coming to an end. Obviously, sporadic cases, and possibly even additional discrete outbreaks, are continuing to occur and will continue to occur no doubt for many years to come. But it may be true - just possibly — that the greatest bulk of cases have already occurred. Not long ago, for instance, I read that the average age of the ME sufferer was 55. It was just one study, and it could be wrong, but it caught my eye because I recall clearly that in the 1980s, the average age of sufferers was nearly always stated as from 33 to 35. If true, this suggests that the attack rate has slowed considerably since the 1980s, at least in the U.S., and that the enormous crush of people who fell ill in the 1980s and early 1990s simply have failed to recover. They have grown older, however. But even supposing the attack rate may be less dramatic now than it was, say fifteen years ago, it hardly changes the urgency of our concerns, both as suffering individuals and as world citizens. We are still left with millions around the globe who are desperately sick, and with new cases every day occurring among once-healthy people, many or most of whom will be sick for the rest of their lives if advocates cannot find a way to radically alter the politics of ME.
But, back to journalism: In my book, with the help of a CDC insider, I documented the theft of millions of dollars, tagged by the U.S. Congress for ME/cfs research, by a cabal of scientists at the U.S. government’s Centers for Disease Control. That was the headline provoking news in my book, I suppose. Certainly, from a journalistic perspective, it was the news that should have attracted a general interest audience to the book. Citizens don’t like to hear about individuals in government stealing millions of taxpayer dollars and—the polite word—misappropriating—those dollars for purposes other than what those dollars were intended for. For such an event to occur within an American “health” agency seemed even more scandalous. Even my fellow journalists, the most jaded among them, were incredulous that a health-oriented agency would engage in skulduggery. The FBI? Yes! The CIA? Yes! The Pentagon? Yes! The little CDC in Atlanta, Georgia? You’ve got to be kidding!
I wrote this book, Osler’s Web, with a great deal of optimism that this sensational news would alter the landscape of the politics of ME a little bit, maybe even a lot. Mostly, although the book itself got strong to excellent reviews, what happened was that my contention that ME was a pandemic disease that had been discredited and swept under the rug by federal health agencies was attacked in places like Newsweek and USA Today. Their proof? They had none; the authors merely insisted it was an incredible scenario; such things couldn’t possibly happen in a free nation with a big federal health research program in place.
My fond hopes burgeoned however when, one month after Osler’s was published, a New York-based Congressman convened a meeting in his Washington office with me and top-level administrators of the Government Accounting Office, the U.S. Congress’s independent investigative arm. The congressman asked me to outline for the GAO administrators the claims of taxpayer theft in Osler’s Web. I did so.
In time, the GAO did pursue an investigation based on the material presented in Osler’s, although there was a curious delay of about two years. The investigative arm of the U.S. Department of Health and Human Services (which controls the CDC) investigated, too. Both investigations confirmed what I had reported in Osler’s—these thefts did occur. (Incidentally, in my opinion, any money spent by CDC on this disease continues to be thievery, since the CDC remains utterly corrupt: the same incompetent scientists from the 1980s are still in charge of the disease, and they continue to publish lie after lie about ME and, in tandem, undercut the work of legitimate scientists who do publish scientific studies about ME by either defaming such studies or ignoring them.)
After these investigations, the head of the CDC, Jeff Koplan, was fired, although he was not running the agency during the years the thefts I documented were occurring. The move was cosmetic, designed to satisfy the U.S. Congress that the slush-fund tactics would end. Indeed, the CDC announced to a gullible American press that a new accounting process had been put in place by CDC to prevent future crimes of the same nature. Whether that has actually been done, or whether it has been done to any good effect, is anyone’s guess. I quit monitoring internal events at CDC in 1995. My historical sense of the agency is that, with the exception of the Food and Drug Administration and perhaps the Central Intelligence Agency, the CDC is perhaps the most secretive, difficult-to-penetrate agency in the U.S. federal government. It is certainly the most overrated in terms of its ability to conduct scientific investigation. Many of its scientists are not competent to work in the private sector; they are all grossly underpaid by comparison to academic scientists. The agency itself is primarily highly politicized.
One of the problems with Osler’s Web had to do with timing: by the time it was published in 1996, the psychiatric construct of ME was so firmly entrenched in the U.S. and abroad that no matter how much evidence one trotted out to the contrary, one was simply not believed. And then, another problem: one could not possibly get to the end of the book without concluding that ME was an infectious disease. This was not only an incredible seeming idea by then to the lay media and the general citizenry, given the federal propaganda blitz they had been treated to during the near-decade I was writing Osler’s, it was anathema to PWMEs, as well. A major patient organization in this country, the Charlotte-based CFIDS Association of America, immediately attacked the book in its patient newsletter, and in frantic haste called upon an American society, the hobbyists of the AACFS, to set the matter straight. The members of this society, in equally frantic haste, issued a press release, still available on their website, saying that there was no evidence that an “epidemic” of “CFS” had ever occurred. In addition, they wrote that journalists did not have the right or the knowledge to write about science or interpret scientific events, only scientists had those rights and aptitudes. I found it curious that the members of this organization, nearly all of whom I had interviewed on multiple occasions over a span of years, had failed to mention these novel ideas to me during our interviews.
Craig Maupin dreams of a day when the science of ME is accepted by mainstream medicine, when scientific studies from around the world make headlines in newspapers—or are even mentioned in newspapers. I think it’s safe to say we all do. But, that isn’t happening. The question is: why?
First, a couple of recent examples: recently a team of investigators found atrophy, or missing brain matter, in ME patients in Osaka, Japan. On average, these people were missing nearly 12 percent of the deep brain, or gray matter, of their frontal lobes. That’s a lot of gray matter. Can maladaptive thinking—you know, having “bad thoughts”—instigate loss of brain matter? If so, that’s pretty interesting! Can CBT restore the gray matter? Did we see these study results reported in the New York Times, or the Financial Times of London, or the UK’s Guardian, or on the BBC, or on any of the U.S. television networks?
Three years ago, studies suggested that CFS is a form of cardiac “insufficiency,” or heart failure. Did that generate news? Not really, aside from a couple short stories on health-related news wires. We read a quote or two from a couple of respected cardiologists and then, over and out. Did the American National Institutes of Health follow up with a request for grants from these and other scientists to further investigate heart disease in end-stage ME? No, in fact, the researchers who conducted these studies were by then out of work since the NIH had months earlier pulled the plug on their research grant. They have scattered to the wind, in the interim, and research into ME and heart disease seems to have virtually ended for now.
Okay—where am I going with this? Craig Maupin, and a lot of other people—if I am reading them correctly—believe that more stories about the suffering of individual ME patients will generate a tectonic shift in media coverage of the disease, which will in turn generate momentum from a caring, sympathetic populace, which will then force governments to shift money toward serious academic scientists and away from opportunistic charlatans who currently clutch the research purse strings.
I agree with part of that equation: that governments will not change on their own; they will change because public opinion demands it. And it is the media that shapes public opinion. But I disagree with what message ME advocates need to take to the media. More stories of individual suffering just aren’t going to make it. In the last two decades, there have been so many stories in so many newspapers and magazines about the long-suffering, ignored, belittled, impoverished, bewildered, chronically ill ME patient, on both sides of the Atlantic, that they can probably never be counted.
Even I—with childlike naiveté, I might add—ventured into that territory in 1986, by writing a story about the onset of my own ME for Rolling Stone magazine. The story garnered a National Magazine Award nomination in the reporting category. It was billed as a “medical mystery” and cherished for its fact-based investigation into what the brainiacs at the NIH were doing about this strange new phenomenon. It was such a “great read,” my editors refused to pare down its length and published it as a two-part series instead, rather unprecedented for Rolling Stone. Was it noticed? You betcha—and by every major national magazine editor in New York. Did it change the universe? Hardly. And I’ve had almost two decades to think about why.
This kind of story is a staple of journalism; indeed, it’s a journalistic cliché: you illustrate a societal problem by telling the story of one individual. It’s a way of making something very large and complicated palatable to the masses. Let me suggest a horrible truth, though it may sound counterintuitive given the natural disaster occurring in Indonesia at the moment: when it comes to disease, and many other unpleasantries of the human condition, most people do not care deeply about the suffering of other people. Especially disease. What they do care about is: am I at risk of acquiring this disease? And if the answer is “no,” they may read with rapt attention the grisly first person accounts of ME that are, by now, legion, or the third person narrative about the innocent who got the disease and is now disabled and helpless and abandoned, but they read such stories the way they read a Stephen King novel. These are fun to read, but they leave the reader shuddering with happy relief that the great tragedy is happening to someone else and will never touch them or anyone they care about. Why? Because typically this disease is portrayed, even in most first-person accounts, as draped in mystery, as if myalgic encephalomyelitis springs from the Id, as if too much stress and shock (divorce, job loss, mother died, narrowly avoided a deer on the highway) instigated the disease. The question that’s always left unanswered is why the absence of stress fails to cure the disease. But who’s really thinking clearly when they read (or write) any of these articles anyway? They’re entirely propagandistic; they play beautifully into the quackish “bad thoughts” paradigm that has grown up over the years like some kind of rain forest canopy, uniformly camouflaging all structures beneath it.
(A nakedly defensive word on my own behalf: I, too, wondered aloud, so to speak, in my 1986 story, what I had done to bring on this disaster—too many deadlines? Too much stress? But I also described my self-revelatory discovery that it wasn’t just me with this astonishing disease, there were thousands, if not tens of thousands, of people in the U.S. alone who were coming down with it as well; I described the Tahoe epidemic; and I quoted public health officials who, at that time, were unafraid to speculate that the disease was an emerging pandemic occurring in tandem with AIDS.)
So, to the idea that there needs to be even more first person accounts of suffering PWMEs, I say, No, enough already. We’ve had twenty years of these accounts, and how have they changed public policy? I would argue, in fact, that they feed the propaganda machine: they suggest this is a mysterious phenomenon that no one can make any sense of, that there is zero scientific understanding of the pathophysiology of the disease, that much research has been conducted but no answers have been forthcoming, that the disease is entirely the problem of the individual affected, or, in the same spirit: it is not a public health threat and cannot be acquired by other people—as long as they live a good and honest life and, exercise, take vitamins, and, of course, avoid stress.
To revisit the AIDS activists one final time: they didn’t go begging, hats in hand, to CDC and NIH, hoping to be taken seriously. They appealed directly to the public, and they did that by getting the attention of the mass media. In addition, they certainly didn’t agonize over good manners, as I notice ME advocates often do. (Privately, I wonder, “Don’t PWMEs realize these folks already think they’re crazy? What possible difference does it make whether PWMEs also say, “Please” and “Thank you” or refrain from emotional outbursts?) Nor did AIDS advocates worry endlessly, as ME advocates do, that divisions and riffs amongst their ranks would make them look bad. Look bad to whom? To the incredibly unhelpful government administrators who are in place primarily to defy scientific progress?
Of course, that particular period in AIDS history didn’t last long because the AIDS advocates had tremendous success, and within a matter of a few years, there were more dollars in the US devoted to every AIDS patient than to hundreds of cancer patients and thousands of heart patients. As Maupin writes, no modern advocacy movement has had greater success.
There are many differences between the AIDS advocacy movement and the ME advocacy movement, of course, and but the biggest difference—and here is where the hammer comes down on my head every time—is that after an initial period of confusion, AIDS was identified as an infectious disease. After which, a relatively brief period of hysteria ensued until it appeared the virus could not be casually transmitted. But, importantly, all taint of blame-the-victim thinking came to an end. Yes, Jerry Falwell and a few others continue to claim AIDS is the wrath of God, but mostly, what moved AIDS into the public consciousness, and as a result churned the engine of research, was an understanding that everyone was vulnerable, no matter what age or sex.
Now, if those reading this think evidence that a pandemic of ME has occurred does not yet exist, or that there is no evidence that ME is a transmissible disease, they are free to revile me or my words and go along their way, possibly hoping for yet another story of personal suffering in a local newspaper as the key to their salvation. Presumably, with each story, their hopes will be raised yet again.
But I don’t think another story detailing the horrors of ME is what is needed at all. These stories are just a different kind of pornography at this stage. Editors are so bored with these stories they generally won’t publish them anyway, unless the patient is also extremely famous. I think instead the media needs to be provided with the truth about this disease: that a pandemic has occurred. That millions of people are sick all over the world, not just one person here and there. That if a reporter comes to your house to interview you, they may be putting themselves at risk, although, at this late date it’s hard to imagine they haven’t already been exposed, so they’ve probably developed immunity. (Too bad there have been no government studies exploring how ME is transmitted, isn’t it? And the next obvious question is: WHY?) The house of cards, remarkably enduring, built by the government liars in this country and the UK over the last twenty years depends solely on consumers of mass media believing none of the above could possibly be true.
4 January 2004
I'm really interested in participating in a class-action suit and have been wondering how to go about initiating one as soon as some sort of infectious pathogen is identified. I wonder if fear of liability/litigation is one of the reasons that the CDC is trying so hard to promote their psychiatric agenda instead of looking at HHV-6A. Can you sue a government agency?
Thanks Sue for bringing up Hillary Johnson.
Separate names with a comma.