Inside the Labyrinth- CFS/ME and the research- or lack thereof

OSLERSWEB.COM Hillary Johnson December 5, 2009

When did it stop being about you and become all about them?
Was it when they decided to pull their funding from a scientist who found evidence for a retrovirus, once she was thoroughly ground up in the cannibalistic maw of the Centers for Disease Control in 1991?
Marc Iverson, the North Carolina scion of the Nucor Corporation who founded the CFIDS Association--purportedly a patient advocacy organization--said he decided to pull the plug because Elaine DeFreitas had been so tarnished by CDC that even if she ultimately nailed down the causative virus, no one would believe her after the government mauling.

In 1995, David Bell told me, "Three years ago I came to understand that the CFIDS Association offered [DeFreitas] up. They said, 'We need to be on the good side of the CDC and the NIH.' Basically, there was a certain point at which the politics came up and the money thing came up, and they decided it was time to dump her," Bell added. "I'm stunned that somebody could be hurt so much."
Maybe that's when it stopped being about you. Eighteen years ago. When it was clear that instead of fighting for patients, or scientists who were trying to help patients, their ultimate goal was to get cozy with the CDC and the NIH.

When did it stop being about you and start becoming all about them?
Was it in 1994, when editors of the CIFDS Association's newsletter, its primary communication conduit with its members, were increasingly prone to submitting articles containing even mild criticism of federal researchers and policymakers directly to those researchers and policy makers for review prior to publication? Late that year a former college instructor, sick for thirteen years, proposed an article about the "paltry response" of the government to the epidemic. She reported that she was told that her article "might have to be cut, because the CFIDS Association (was) trying to work with the government."

Was that when it stopped being about you and started becoming about them?
To a disgruntled member of the group's Public Policy Advisory Committee, executive director Kim (Kenney) McCleary wrote that same year, "[You] want the Association to discontinue its present style of advocacy and employ 'rage' tactics similar to those employed by Act-Up and aggressive activist movements in the breast cancer movement...While I agree that we have a great deal to learn from the successes achieved by AIDS and breast cancer activists, there are several barriers to the Association adopting an advocacy style that depends so heavily on these strategies. First CFIDS is not accepted by the general public as a serious, threatening illness, like AIDS and breast cancer are. Second, there are no well-funded public education campaigns to provide a foundation for enlisting the general public in our efforts at this time. Third, rage, while powerful, is a volatile emotion that requires and consumes tremendous amounts of energy (and political capital) to sustain. It is difficult to control and can easily backfire. It erupts spontaneously in response to an incident or crisis and then peaks and subsides quickly. We must use it judiciously."
Kenney advised that in the years to come, "the Association will continue to build on [a] moderate, essentially mainstream, approach to advocacy."

At the time, Paul Cheney found a certain irony in the group's newfound compliance with NIH and CDC administrators. "It's an aspect of institutional growth," he told me. "They now see themselves as part of the establishment, and they're adopting the methods of the establishment."
Maybe that's when it stopped being about you, in 1994--fifteen years ago--and started being about them.
Was it the day Osler's Web, the first and only major book, nine years in the writing, about the government's negligent history in your disease, was published in April of 1996? That day, shortly after I appeared on Good Morning America, an unidentified person called my publisher's publicist, reached an inexperienced secretary, told her a tall tale about who they actually were and persuaded the secretary to fax them a copy of my nine-day, seven city book tour schedule, which outlined in detail every radio interview, every television appearance, every newspaper interview and every bookstore appearance I would be making.
For the next nine days, I was haunted in interview after interview by the specter of retired NIH scientist Paul Levine, who in apparent obesience to the CFIDS Association, interfered with my ability to discuss with my interviewers the news and information that was actually in the book. Levine just happened to phone into every radio show in every city I was booked on, throwing around his weight as a former government scientist to get on the air and engaging me in one hysterical debate after another about whether "CFS" was infectious. In the press biz, that's what you call a "Truth Squad."

When I covered Jane Fonda and Tom Hayden for Life magazine in the late 1970s while they campaigned, they were met everywhere by truth squads, too; nerdy-looking guys holding up signs that read, "Nuclear Energy Never Hurt Anyone." But why would a patient advocacy organization sick a Truth Squad on an author who was trying to publicize an important book on the complex and highly politicized nature of the federal research on that disease? A book that offered the first hard evidence of fiscal malfeasance and scientific fraud at the Centers for Disease Control?

Was that when it stopped being about you--patients--and started being about them? Fourteen years ago?
Or was it when the CIFDS Association trashed the book in their newsletter, causing my incredulous publisher to ask, "But why would a patient organization do that?"
Was it when the CFIDS Association called up the organization known today as the IACFS to ask its members to issue a press release attacking the credibility of Osler's Web? Dutifully, the members of this organization engaged in a round of hasty faxes (I have their correspondence), to arrive at their condemnation of Osler's Web and its author. Exactly one member dissented and refused to sign on to the press release: Dan Peterson, who remarked that instead of attacking Osler's Web, members should celebrate the occasion of the book's publication as the first real opportunity to engage the public in a conversation about the serious nature of this disease and the changes that needed to be made inside the federal health agencies. Peterson's proposal was overruled.

A press release was distributed. It's gist: journalists didn't have the right to write about science; only scientists had the right to write about science. Interesting--since virtually every member of this organization had agreed to countless lengthy interviews with me over the years and were fully aware that I was a journalist, not a scientist. I guess these folks think journalists should write about science as long as they function as stenographers. (The press release remained on this organization's website for the next eleven years, until the site underwent a redesign in time for the organization to request donations from patients, at which point they removed it.) Fortunately, no one in the media paid any attention to this document; Osler's Web received wonderful reviews from professional book reviewers, but what does this episode say about the ethics and motives of the CFIDS Association? What about my book scared them so much? Did it expose, unintentionally, their failure to advocate for patients?

Early on in my reporting for Osler's Web, long before the CAA was a national organization, it's founder Marc Iverson paid my airfare and hotel expenses so that I could attend three medical conferences related to "CFS." In return, I wrote three stories for the fledgling newsletter describing those conferences in some detail, helping their members stay abreast of scientific developments. It seemed a reasonable exchange: I had no money, they needed a writer. Had I been working for a magazine, I would have been paid for my writing, too, but I was repsectful of their non-profit status, and they left my reporting alone. Years later, when my book came out, I thanked them along with the Fund for Investigative Journalism, which gave me a grant (and asked for nothing in return) in the frontspiece of my book. Apparently--perhaps because the book was not all about them--their impulse was to manufacture an ad hominem assault in tandem with the rest of their frantic activities described above. It's demonstrative of one of the organization's major failings: They have no real concept of a free press, or of what journalists actually do; they apparently fail to distinguish between journalism and public relations.

Did it stop being about you in 1998, when Kim Kenney and her lobbyist Tom Sheridan took Bill Reeves under their wing and helped him obtain Federal Whistleblower status? Even though, two years earlier, Osler's Web had provided abundant evidence that Reeves and his agency were the PROBLEM? It wasn't even necessary to have read the book. By 1998, anyone with the most minimal understanding of what was going on was aware that the Centers for Disease Control were dissembling, stalling and hurting patients, depriving them of their civil rights and impeding their access to medical care. Kim and Tom made sure Bill Reeves would be in charge of your disease for years and years to come; they cemented him down, providing him immunity even from being fired by his own superiors.

Was that when it stopped being about you and started being all about them? Eleven years ago?
Did it stop being about you, and start being all about them, when, having revealed themselves to be supporters of the very agency that had hurt patients so profoundly, they signed on as a government contractor to the Centers for Disease Control in return for $4.5 million? And what did they agree to do for the CDC in return for that money? "Brand" the agency's false construct "chronic fatigue syndrome" into the mainstream through websites, TV ads, and a collection of photographs by an expensive fashion photographer, which is still traveling the malls of America. And that's been helpful, hasn't it?
In 2006, they spent about $3.5 million on public relations for CDC, and less than $200,000 on lobbying for your disease in Congress. How did your life improve as a result of the CAA's multi-million contract with CDC? Did the NIH start funding research? Did the CDC start doing epidemiology? Did anyone in Congress stand up and demand an investigation into the shady activities going down in Atlanta? Were you, or your loved ones, aided in ANY palpable way at all?

Is a patient advocacy organization still a patient advocacy organization when it becomes a contractor to the very federal agency responsible for the desperate plight of patients?
How about NIAID director Anthony Fauci's 2001 decision to stuff your disease into the Office of Research on Women's Health, a virtual janitor's closet at the NIH, where, along with the brooms and mops, your disease was effectively disappeared when the door slammed shut? Exactly where was the CAA when this went down? Hobknobbing with the executives in this office, forging ever more cozy ties while the ORWH made sure the NIH continued its policy of failing to pay for research into your disease. Why wasn't there instead a demand by CAA for a Congressional investigation into the NIH's handling of a devastating, likely infectious disease of, by then, one million people?

Is that when it became all about them, and not about you? Eight years ago?
Did it become all about them, and not about you, in 2006, when Kim McCleary, her organization under contract with CDC, played hostess and enabler to the CDC's roll out of its theory of causation at the National Press Club in Washington, D.C.? Suzanne Vernon and her boss Bill Reeves presented their eugenicist explanation of the disease and the stenographer-reporters ate it up: genetic predisposition to being unable to handle stress + childhood abuse = CFS. Oh, and by the way, as many as ten million people had this "illness," and most of them had yet to be diagnosed, they added. Remember: “Get Informed, Get Diagnosed, Get Help”? The headlines went viral. Twenty-one years after Tahoe, and after hundreds of millions of dollars wasted by CDC on Abt Associates and the CFIDS Association, and the message was the same: chronic fatigue syndrome was not a medical disease, it was a lot of stressed-out, traumatized people. CAA faciliated, enabled, this gargantuan lie, yet again selling out patients. And why? For money and for the self-aggrandizing appearance of power?
Is that when it started to be about them, and not about you?

A few months later, I encountered Suzanne Vernon at a medical conference and asked her about that lie, the one about the number of people with CFS and CDC/CAA's emphatic insistence that eighty percent of them weren't diagnosed. After fifteen minutes of heated discussion, Vernon finally admitted none of it was true; she admitted to the lie. "But Hillary," she said, as if she actually knew me, "aren't you happy that CDC is finally doing something about this disease?" And I was left speechless. This person calls herself a scientist? She admits CDC is lying to the press, to patients, but wonders why anyone would fail to be less than happy about it? Haven't there been enough lies? I am, we are, supposed to be "happy" that this CDC/CAA hybrid Medea is spending millions of dollars to market yet another lie?
And where does happiness enter into this equation? Is anyone seeking happiness from CDC? I don't know about you, I used to seek science from CDC. On top of the lies, it's that kind of condescension, that smarmy "poor you" mentality that pervades the leadership the CFIDS Association, that's so nauseating, that has that fingernails-on-the-chalkboard quality. In person, and in their literature, they inevitably sound like they're addressing the newly-lobotomized.

Did it become all about them, and not about you, when the CDC's Suzanne Vernon moved over to the CAA shop? Vernon, who told someone I trust that during the decade she worked alongside Bill Reeves manufacturing abnormal science that the remarks, the activities, the jokes, the attitudes about you and your disease among her colleagues was so appalling that she could not discuss that history in any detail, she was just so ashamed to have been part of it? With Suzanne Vernon's leap from Atlanta to Charlotte, CDC DNA was fully co-mingled with CFIDS DNA. One could employ the Trojan horse analogy about Vernon, but I think its worse than that. It’s not that one of the top “scientists” in the fraudulent CFS program at CDC has surreptitiously invaded a patient organization. Matters have progressed much farther than that. The CDC and CAA actually became one, as in “co-mingled,” ages ago. At this point, it's an inextricable mess. Anyone see Jeff Golblum in the 1989 remake of "The Fly"? You know--what's Brundle (the mad scientist), what's fly? In the end, Brundle was pretty much all fly.

Did it become all about them, and not about you, when the CFIDS Association sought to position itself as a kind of mini-research institute, a provider of grants to scientists, with former CDC scientist Suzanne Vernon the arbiter of what was and was not worthy science? Was it about them, or about you, when Vernon and McCleary turned down no fewer than six grant proposals from the Whittemore Peterson Institute?
This litany is hardly complete--in fact, it's woefully inadequate, because I've left out all the backroom wheeling and dealing on Kim McCleary's part, the years and years of brokering partnerships, kissing up to and making friends with, enabling and facilitating, the very people in government whose activities prevented you from getting appropriate medical help, which has been the true legacy of the CFIDS Association. McCleary’s brand of “moderate, essentially mainstream” advocacy has amounted not to advocacy but instead to McClearly’s having a voice at major CDC conclaves on this disease, like the agency’s “Blue Ribbon” committee a few years ago to evaluate the CFS program in the agency.
She has failed to use her access, her voice, in any way that might have been helpful; instead, she has identified with government officials and their problems instead of your problems; she’s made it easy for them to keep you quiet and (and sick), all the while assuring you in that unctuous, phony PR patter that she’s on top of things.

But, I'll just jump to the critical present moment. Since October 8, 2009, the CFIDS Association appears to have been awash in a truly absurd jealousy over the WPI discovery of XMRV in "CFS." And isn't that more about them than about you?
Instead of hailing the finding of XMRV as the long-overdue solution to this disease, Vernon and McCleary mimicked the Centers for Disease Control, an entity with more reason than any to cast this unimpeachable finding into the Waring blender of obfuscation, but then, as I've suggested, the CFIDS Assocation is CDC, and vice versa. Vernon and the CFIDS Association fell all over themselves in an effort to caution that XMRV will probably apply only to a "sub-set;" it may be a "passenger;" the patients weren't well characterized; there must be co-factors, in other words, it's multi-factorial. A patient advocacy organization that knew what it was doing would jump all over XMRV, using this discovery to advocate for patients at the highest levels of government; why, instead, did the CFIDS Association just echo the CDC?
Their sister agency CDC, would like you to believe the same about XMRV: multi-ignorance. I suspect thats what Anthony Fauci at NIAID hopes you believe, too; it gives NIAID a reason to do NOTHING. (Watch NIAID carefully; by the way. Will Dr. Fauci, NIAID's Napoleonic chief, take on this major infectious disease, or will he continue to insist it's mental illness?) Without appropriate political pressure from patient advocates, National Cancer Institute scientists--who are the best you've got--may find a reason to move off XMRV and CFS, too, and move instead onto XMRV and other diseases it might cause, especially and, in fact probably exclusively, cancer.

The CFIDS Association wants you to get behind THEM, as usual, not XMRV. They didn't discover XMRV--and how could they? They're not scientists. XMRV did nothing to advance their hegemony, which made it virtually useless to them. (Until they figure out a way to harness the discovery to lend them prestige or the appearance of authority.) Besides, XMRV is an infectious, cancer-causing retrovirus, and we know how they hate infectious diseases.
Mikovits et. al. have moved this disease out of the muck and into the world of white glove science. Will the CFIDS Association be able to get away with its pretense of patient advocacy much longer? Or will it finally be recognized as a government public relations agency paid to keep the status quo? A lot depends on you.
HIV was hailed as the cause of AIDS in the U.S. in the spring of 1984, after the NCI found isolates in fewer than fifty patients. A few weeks later, an NCI scientist isolated the virus from the blood of a nurse in Los Angeles who fell ill with AIDS after a blood transfusion and the virus was found in the donor blood. That's all it took. Less than a year later, on March 2, an FDA-approved commercial antibody test from Abbott Labs became available to search for the virus among blood donors. Meanwhile, AIDS advocates demanded that drug development begin immediately, and so it did.

Kim McClearly appears to have learned nothing about the tactics used by AIDS activists, or breast cancer activists, though she admitted in 1994, fifteen years ago, she had much to learn. I suggest she is completely uninterested in those tactics; she is instead interested in nurturing her good relationships with administrators at federal agencies who have done nothing to help, and everything to hurt, patients. Nancy Klimas' AIDS patients are "hale and hearty," in Klimas' words; her CFS patients have been sick as dogs for years and years. Imagine a parallel universe where AIDS patients in 1984 gave up their collective power and agreed to be represented in Washington, D.C. by a "patient advocacy" group with the flawed agendas of the CFIDS Association! Where would they be now? Where we are now?

If the CFIDS Association was the patient advocacy group you deserved, it would not be playing politics with you or with XMRV, it would be taking this finding and running with it instead of suggesting it's a passenger, a co-factor, a sub-set or part of some multifactorial multi-ignorance. With one hand it would be demanding to know why it took 26 years, and a private philanthropic effort, to find XMRV. With the other hand, it would be demanding clinical trials and drug development at FDA, instead of warning you it might take years for therapies to be developed. (If you accept that lying down, it’s virtually guaranteed it will take years.) It would be asking why CDC is wasting time trying to replicate the finding in CDC-selected patients instead of turning the agency's full capabilities toward determining the presence of XMRV in the population. It would be calling for Anthony Fauci's resignation from NIAID.

Over the last quarter century, the question has arisen again and again: why are “CFS” patients so "passive"? Why have they allowed this organization to speak on their behalf and negotiate their relationship with federal health agencies for them? Arguments advanced have included, they’re too sick, which, to me, has always had legitimacy, and, “They’ve got Stockholm Syndrome,” which to me does not have legitimacy, maybe because my life experience has made me leery of nearly every psychologically-based theory of behavior. I think people with this disease have had enough contemptuous armchair psychology thrown at them. I do wonder if people are intimidated, however; if people who have already been so marginalized and abandoned might be more than unusually sensitive to fears of reprisal and dismissal. To have this disease, almost by definition, is to feel disenfranchised, alone, discarded. Does that make it infinitely harder to rock the boat?
Even the CFIDS Association appears to realize it finally may have gone too far this time. Yet, the best the CFIDS Asociation has been able to come up with is a muted apology for its lack of enthusiasm for the fact that an oncogenic retrovirus—hints of which have been present for the last twenty-five years—has been isolated in patients. Tellingly, the apology seems to be more about failing to adopt the right "tone" and craft the "message" properly than about anything else:

"Content, tone and timing are all important and, at times, we acknowledge that we have gotten only one of the three completely right. And we recognize that these missteps have created some questions and strong feelings about our response to the XMRV study. Be assured that we share the hope and anticipation that these important findings will lead to immediate advances in diagnosis and treatment. And know that we're listening to feedback, shared both directly and indirectly, with us. We're constantly working to refine our messages to ensure that we deliver the factual, focused communications you count on."
To which I would say, Stop refining already! Seeking to craft and manipulate reality is just another way to mislead, not far removed from lying.

Where is the ADVOCACY? Where are the DEMANDS? What is the STRATEGY?
The discovery of XMRV's powerful association with "CFS" is a defining moment; it's the paradigm change that was so desperately needed. I've heard a number of scientists say, "We're where we were when HIV was discovered." I think in terms of patient advocacy, one could say the same. But Kim McCleary's CIFDS Association isn't up to the job; it sold out years and years ago. The organization has a bright future as a public relations firm for corporate entities wishing to curry favor with CDC and NIH. It's beautifully-positioned to do that. Two decades after it began making deals with the devil, is it too soon to say good luck and good bye to the CAA?
Like CDC, the CAA is unlikely to go away, of course. As individuals, they're deeply entrenched and invested, as is their brand. They make their counterparts in government feel comfortable. But we need some uncomfortable voices now.

I suggest that it is time to start asking what actions need to be taken to advance XMRV down the court. It’s time for new organizations to be forming. Time for the advocates who are ready to make the right demands of the right people to stand up and let the CDC and NIH know that the CFIDS Association of America isn't the only game in town. It’s time for advocacy organizations that focus on political strategy exclusively instead of attempting to conduct research, the government's job; time for an organization that refuses to become party to the government for millions of dollars in remuneration, selling out patients in the process. Time for an organization with an effective media strategy, one that includes pushing stories about the government's history of scientific fraud and corruption in the realm of this disease instead of weepy human interest stories that promote poster children instead of scientific understanding.
If none of what I've written here rings true, then I am obviously alone in this matter. Certainly, I've been on the receiving end of the CAA's wrath, which gives me some added oomph, but my point here is that every one with this disease has been on the receiving end of the CAA's passive aggressive representation, everyone has been sold out, again and again. And so I continue to suggest it's time to at least consider that it's all about them, and not about you.

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Addendum: I wrote this two weeks ago, and then decided not to publish it. Why bring people down at what is certainly the most promising moment in the history of this disease? But I recently looked at the CAA website and read the latest comments by Suzanne Vernon. Hewing to the CAA’s imperative of self-promotion and self-congratulation in every word and deed, Vernon actually touts the fact the CAA provided seed money to Elaine De Freitas, apparently in an effort to demonstrate that the CAA was first on the block in the retrovirus hunt and actually moved the science forward.
Vernon keeps the CAA ethos alive. Ever eager to whitewash history, the imperative being to promote the CAA regardless of the truth, she and her organization seek to twist the reality of what it did in 1992, presumably in case anyone reads the real history and realizes the extent of the CAA’s duplicity. In the CAA cosmos, spin is everything.
Vernon fails to mention that in fact CAA withdrew its support of DeFreitas at the most crucial moment imaginable, a move that allowed the scientist’s findings, and her reputation, to crash and burn. CAA “enabled” CDC to further disappear your disease. CAA’s withdrawal of support meant that for the next twenty years, the search for the viral cause of this disease languished while psychiatrists defined the disease and the cause—a process in which Vernon was intimately involved by virtue of her work with Bill Reeves at CDC. And that’s just another way the CAA has hurt you over the years.
If you add up McCleary's and lobbyist Tom Sheridan’s salaries over the last twenty years—say $100,000 each per annum, a generous underestimate—you get $4 million. That’s how these two profited off this disease, at a time when a million very sick people lost their incomes.
What more can one say about this slick, overblown operation? It exists to keep McClearly, Sheridan and now Vernon, comfortably employed. What else it does that is actually helpful to you, I cannot say.