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.
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.
Comments
--Patricia
Somewhere in the mix, Cort Johnson let us know that the CAA told him that XMRV research was turned down because the patient selection process didn't meet CAA standards. This defied the CAA's own proclaimed stance of not discussing the grant applications that were not approved.
When questioned about this, CAA responded that they never received any grants for XMRV research. I say they are splitting hairs. It would not have been CALLED XMRV research at the time of application.
And, as you say, both the Thanksgiving "apology", and the recent statement by Kim McCleary that the CAA is paying attention to what PWCs have to say, are laced with self-congratulatory babble. The CAA is wonderful. Just ask them, they'll tell you.
Yes, we each have a voice. Our voices can be used collectively, or independently. Let's use them.
The CAA will never see another penny of my money.
"Of the twelve years I have been working to solve CFS, these past two have been the most challenging, exciting, and rewarding of my professional career. Challenging because we have strategically realigned ourselves to be the largest CFS advocacy and research support organization in the U.S."
So, "strategically realigned ourselves to be the largest CFS advocacy and research support organization in the U.S."?
This is when they definitely stopped being for us. Whenever marketing themselves as the largest took precedence over advocacy.
The CAA has asked for donations repeatedly, annually, to support the lifestyles to which they have become accustomed. They asked for donations from the very people who became impoverished by the disease that they have thrown under the bus. They are indeed lackeys of NIH, CDC, and DHHS. They will crawl under any door to sniff out money to support their lifestyles.
I have detested KKM for over 10 years after observing her condescension first hand in many meetings. Once in a while she manufactures a statement where she appears to lash out at some bureaucrat or another. It is street theater. There is cozying up right after the performance. I have witnessed this.
It is past time for us to throw the CAA under the bus. Flatten them like a crepe. Get them away from us - they and the Sheridan Group have hurt us almost as much as the CDC, NIH, and the damned disease. The vacuum left by their dissolution would be infinitely better than the status quo.
Kim, you are reading these comments I know. You are no longer trusted. You have become good at one thing and one thing only: keeping your job and your cronies' jobs afloat. You have NO credibility left. XMRV has destroyed you too. There is some irony for you.
So do us all a favor, walk away from your cushy job in Texas, and hand the reins of the CAA over to someone who gives a damn.
This will happen about the time pigs fly. Somehow, we must impeach her. Hillary - any high crimes and misdemeanors attributable to KKM that might provide us with a legal leg to stand on to send her and her cronies packing?
You pinpoint my worst fears about how "they" will handle the XMRV finding!Your blog has really opend my eyes about the surreal politic involvement in science, especially in CFS.It a true c shock, but finally the pieces come together! Have been cluless of whats going on for years! Living in Sweden, a small country where nothing in this field has happend for the last 20 hellish years of struggle whith this disease, I´ve often set my hope to researchers an patient advocats agencies in the US. We even used to have a member on the CAA board, Prof B.Evengard. I could never understand why she never mentioned the biomedical research about CFS from the international conferences she attended? There was just BT and GET. Then heard recently she´s a friend of Reeves, and I slowly got the picture. My point is, this neglect and actually criminal attitude and actions to diminish and strip us of our human rights has to stop! All over the world! Specially since CDC influences what standpoint is taken in smaller countries all over the globe,not just in the US. I read the Swedish agency Infect Disease just answered a question from a ME-patient about blood donation and they just stated it´s no problem for CFS patients to continue to donate blood inspite of XMRV since the CDC had not adviced against it and the study´s not replicated! We must not just speak our minds, we must roar! I commend and thank you Hillary for your brilliant penfight!
This week two advocates were subject to abuse and threatened with House of Commons police at an APPG meeting, and Charles Shepherd of the MEA saw fit to denigrate THEM in his 'report'. The Meeting before, a charity rep was aggressive towards an ME sufferer, Shepherd reported it as 'lively'. This is just one small example of how charities act to police and repress advocates and fail to stand up for the people they claim to represent.
Sadly, I think your comments about people's increasing tendency towards 'passivity' are also very accurate. I do think this problem has structural causes as you outlined. One structural cause I would add is the constant ad hominem misrepresentation of ME sufferers as unreasonable, aggressive, and recalcitrant. Over here at least that has been perpetuated by psychiatrists and other supporters of the psychiatric paradigm of this illness, but government, the media have all jumped on this bandwagon, and, worst of all, key charities perpetuate this. If people raise any objections, they suffer character asassinations.
I don't know what the answer to this is. I do know people need to get wise, and quickly, to the various strategies used to keep them from raising legitimate objections though.
No Hillary, you are not alone. You have the talent and knowledge to keep us aware of facts along with some others. But the fact remains we need a new advocacy organization with the clout to overshadow the CAA while helping "us." How does that happen. I've had CFS for 25 years and at 70 I'm ill equipped for much except a local newsletter. I always provide links to your latest blogs in my newsletters for the benefit of those too ill to keep up with all the news.
I finally gave up on the CAA when they placed a speed skater on the cover of the Chronicle. Even today, I don't know quite how to articulate this travesty. While they pursued the image of a mainstream, illness advocacy organization, their members were being chewed up and spit out by the world, consigned to the margins of life, and reduced to penury.
Positive thinking or pathological denial, a denial which fed into a lot of people's desire, including probably mine, to not face the scale of the calamity we found ourselves in. The CAA had a duty to keep it real, to serve as a touchstone for sanity. Instead they conflated advocacy with access and colluded with the dark powers that were attempting to drive us crazy.
Here's my favorite analogy and favorite Jewish Joke: The Nazis have rolled into a Ukrainian village. Hymie and Moishe, with the rest of the men, are digging their own graves. Moishe, who can no longer contain his rage, is cursing and spitting, and shaking his fist at the soldiers. Hymie, increasingly uncomfortable, cries out to him, "Moishe, don't make trouble!" Thanks for your work Hillary.
I belong to the group who watches the XMRV research with interest, but haven't jumped on the bandwagon yet, awaiting confirmation. Is it a safe course to place all your bets on XMRV? What if the research doesn't get confirmed or if it only affects a small subset of ME/CFS patients? The psychomafia will have a field day and come back with a vengeance.
We in the UK seem to have suffered an eerily similar fate.
Thank you. Thank you. Thank you. Can't thank you enough.
Continuing Medical Education Challenges in Chronic Fatigue Syndrome.
Journal: BMC Med Educ. 2009 Dec 2;9(1):70. [Epub ahead of print
Authors: Brimmer DJ, McCleary KK, Lupton TA, Faryna KM, Reeves WC.
NLM Citation: PMID: 19954535
The hell with them. I stayed out of this fight for a long time but stopped giving them money after about the second year of my illness. What research were they doing for us? What good had they done? What good have they done after all these years? Like you have already said - NOTHING, it IS all about them.
One caution - we also have to emphasize in every possible media contact that XMRV is FAR from the first evidence of a physical cause of CFS (...as if everything is psychological unless proven otherwise..); that in fact there have been thousands of studies, including the very compelling genetic ones, that together unmistakably document a physical disease process. That way, even if XMRV turns out to be a bit of a dead end, public and professionals alike will have been made aware of something they SHOULD have been made aware of long ago.
-D.Y.
American scholar Warren Bennis said, "Bureaucracies are beautiful mechanisms for the evasion of responsibilities and guilt," - this was used by Deirdre Imus (Huff Post) directed at the CDC in an article but also fits the CAA as well. Both the CDC and CAA exist to exist for themselves now. Fine. Make sure every CFIDS sick person knows NOT to send any money to the CAA as it gets wasted in much the same way as the CDC's hundreds of millions have. No more funding, no more CAA. And some other Advocacy group will step up to the plate and stay out of bed with the CDC/Reeves this time. Lessons learned.
http://cfidsresearch.blogspot.com/2009/12/cdc-mecfs-group-relieved-of-xmrv.html
Monday, December 7, 2009
CDC Damage Control: ME/CFS Research Group Relieved of Duties
In a stunning move, responsibility for XMRV research has been taken away from the ME/CFS working group within the CDC, and re-assigned to the division of HIV/AIDS prevention. This group will be in charge of replicating findings of the Whittemore-Peterson Institute, rather than the group under the control of Dr. Reeves. The move is highly significant: it appears that the CDC is now acknowledging the serious nature of XMRV.
The CDC will be part of an interagency working group on XMRV, led by Dr. Jerry Holmberg. A three-part study will be initiated:
1. The first part will consist of standardizing and validating laboratory methods and reagents for XMRV testing. This stage will use samples provided by samples collected by Dr. Judy Mikovitz. The intention is to create an FDA approved test.
2. The second part will test a much larger sample than the initial study, trying to determine the prevalence of XMRV in the general population, and the blood supply.
3. The third part will consist of how XMRV is transmitted, how it causes disease, and how it affects various subgroups of the population.
The forceful demotion of Dr. Reeves is a sign that the CDC is in damage control mode. The HIV/AIDS prevention group in the CDC has many capable retrovirologists, who can provide years of expertise...
It's great that Reeves isn't supervising the tests. But remember what happened when CDC's retrovirus branch "tried" to replicate DeFreitas' findings using her samples.
Hopefully they will see through Reeves and any nonsense he tries to tell them in the hopes they will accidently on purpose not find XMRV.
We do need more aggressive voices. Now is the time to hammer your congresspeople and senators, HHS secretary and inspector general etc. about kicking Reeves out and replacing Reeves' garbage definition with the Canadian ME definition.
It's funny. I went to Georgetown Law, a liberal school that had a bit of an emphasis on public law and, among some professors, 'public choice theory'. "Public Choice" is this area of jurisprudence basically obsessed with explaining the failures of American government process. The culprit is special interests groups that almost always "capture" and control the agencies that are supposed to be regulating them. The exact opposite seems to be the case with us! CDC has 'captured' CAA. It's crazy!
http://www.facebook.com/note.php?note_id=184085913025
As noted in Osler's Web DeFreitas' was a non-type C retrovirus. XMRV is a type C (gamma).
WOW! So we all need to spread the word there are probably at least TWO retroviruses in ME and take advantage of the current public attention to also demand NIH EXTRAMURAL funding for a new attempt to replicate DeFreitas' findings. Hopefully this will be much easier scientifically with modern lab tools improved since 1990.
(2) "CDC CFS VIROLOGY STUDY FINDS NO LINK TO XMRV, STRONG LINK TO CHILDHOOD BEDWETTING"
This will be the headline in NY TIMES if we don't act on below info:
IMPORTANT ADDENDUM TO THE BLOG POST INFO ON XMRV WORKING GROUP:
- In 'phase 2' the working group will also look for xmrv in "other CFS populations". We know what that means- overweight, depressed women in Wichita who do not have ME, but are included in the Wichita Cohort per the ultimate POS Reeves CFS definition will skew results toward non-retroviral bed-wetting!!
- (the working group will be lead by an unidentified person from NIH’s National Heart, Lung and Blood Institute (NHLBI))
- So, we need to bombard decision makers- congress, HHS, NIH with demands that a CANADIAN ME definition cohort be used NOT Reeves definition Wichita and Georgia cohorts.
I post below my email to Dr. Holmberg, the chief blood safety guy at HHS re my concerns. Sorry it's alittle lengthy. It would be more appropriate to provide a link, but I do not yet have a blog or somewhere else online to put it. I will post contact info for people to write to when I get it.
For Jane:
I don't direct my rancor to any at the CAA except Kim, and that is for a personal reason, and the Board of Directors who were in office when Mark Iverson was ousted. That was because of Kim also. Many years down the road, the whole CAA looks toxic to me, but with certain changes they could be effective. Right now, they are irrelevant.
Kim is a very savvy woman. She makes friends easily and shmoozes like a pro. Oh wait, she is a pro. Your trust in her goodness does not negate my belief and knowledge of facts of her opposite side. Given a choice of getting rid of Reeves or McCleary, I'd choose Reeves, because all Kim does is to divert any help we might get through her collusion. Reeves actively harms all of us, he works to do it, it is his intention in his professional life.
He needs to retire, permanently, and Emory needs to be told who they are adding to their staff. Write letters to Emory to wake them up.
Pat
Dear Dr. Holmberg,
Thank you for being on top of the issue of XMRV in the blood supply. I saw your presentation before CFSAC.
I have ME (CFS) and would like to express a couple of concerns to you
(1) WPI has posted on their facebook notes page that the retrovirus discovered by DeFreitas and Cheney (a non-type C rv) was not XMRV (a type C). It is imperative that NIH grant EXTRAMURAL study funds to WPI or someone else of similar caliber to try to replicate her findings. Hopefully it should be easier now with improved lab tools since 1991. I am not a scientist, but from my knowledge of the history, it is clear CDC and NIH have always been strongly biased in their treatment of this disease. It seems they let their bias influence their results in the 'attempt' at replicating DeFreitas' results.
We know now that it is highly probably XMRV is highly associated with ME contra to the attitude, statements and publications of NIH and CDC over the years and continuing today (!!)- i.e. Dr. Reeves' continuing comments in NY Times that XMRV is probably not found in 'CFS' patients, etc.- that it is highly unlikely any retrovirus is associated with ME. This highlights their BIAS against retroviral association and argues for new EXTRAMURAL research into the DeFreitas/ Cheney rv.
(2) FWIW- You are the expert, but it strikes me as obvious that, pending further study, ME patients not be allowed to donate blood as a precautionary measure.
I would also like to know the identities of (a) the head of the HIV/AIDS branch, (b) the lead scientist on the study at the HIV/AIDS lab and also of (c) the people who will be on the XMRV working group, when that is decided. I would like to communicate with them about my strong concerns, to wit:
(1) Studying XMRV in any cohort defined by the ludicriously flawed 2005 Reeves 'emprical' definition of 'CFS' will be yield INVALID results. The cohort MUST be defined by the CANADIAN government ME definition or at least the Fukuda criteria. Prof. Leonard Jason has shown that a significant percentage of people included in any Reeves definition cohort do NOT have ME (CFS), they instead have major depression or other illnesses.
Reeves has already wasted millions of dollars on useless study of Reeves criteria patients which has muddled and retarded the science. This is of very high concern to patients and would be a complete deal breaker. What I mean is: though I can't speak for other patients, I can say that if you think ME patients are angry now, just wait until you try to study XMRV in Reeves criteria patients.
(2) I understand that Dr. Reeves and the 'CFS' group will not have direct supervision over the studies to be performed at the HIV/AIDS lab, but I feel that the attitude generally at CDC and NIH and specifically of some individuals such as Stephen Straus tainted the scientific objectivity of Tom Folks and his assistant at CDC's Retrovirus Branch when 'trying' to replicate DeFreitas' results. I want the working group and the lab to try to remain as objective as possible and not have any contact with the CDC "CFS" group or anyone else with a bias re ME.
I know you are very busy and giving the XMRV issue appropriate attention. And it's not fun for you to have to deal with contentious issues like this- it's not fun for me either. I wish I weren't necessary. So, thank you for your consideration! I look forward to hearing from you.
Justin Reilly
Week one of the XMRV announcement, I was euphoric. I started re-involving myself in CFS support and activism related activities online. I read and read and read some more about how this might change 'everything'. I put up a blog, got involved with forums and started talking about 'it' again. I got facebook, and started preparing emails to send out to all my friends and family, to help them understand what XMRV meant to all PWC's. The first mailing, out of 15+ contacts included, all friends and family, I got one response. one. "That's ok", I thought, "They just have to understand it more".
So, during the next month, I sent out more emails, trying to elicit up support and advocacy from them to mail emails and letters to their representatives and congressmen and woman. Letters to the new surgeon general. etc...
I got 'one' response. it said "will do!" Since the announcement, and a total of 5 'email updates', I have yet to hear back from ANY of them with follow up questions and/or interest.
I guess I should have known that would happen, but it floored me. But, after rethinking about one contact, who for years sent me Breast Awareness campaign emails every year, I guess I should not have been so surprised. (And no, she didn't have breast Cancer, nor did any of her friends. It's just that breast cancer was 'real')
My point is: I don't really know what advocacy looks like. Except from your book and blog, and those newly found friends I now confer with daily in the WPI forums. But the CDC's whitewash for the last 20 years has clearly dictated the level of advocacy I could expect from non-pwc friends and family. That, in and of itself, tells the complete story of how Good the CDC has been able to squash us all into the gutters.
So, this month, I have backed off a bit more into shadows again (I too, have been well programed). I know how good a job the powers that be can do, to move the "CFS" XMRV findings into the janitor's closet again. I know how good they are at chewing up anyone who stands in their way of trying to keep things quiet. For example, this week alone, I have read 4 major articles on XMRV. Not ONE of them used the word "CFS" in relation to XMRV. They mentioned how it related to prostate cancer is all. And at the end, they did say, how there could be treatment hope for them, and possibly "For other illnesses as well".
The segments I have seen on TV regarding this are on shows for women and there was an article in Women's Day. (God forbid they should even mention this is a deadly pediatric disease) So, already I can see that powers are trying to distance us from the prostate cancer XMRV findings, and put us right back into the 'women's' trash bin. There's this pit in my stomach that is starting to ache again. There are tiny hairs standing up on the back of my neck.
There is nothing they do not have at their disposal to derail us. They have been at this con job for 20+ years, and they are gooood at it. So make no mistake, people, they are already scheming ways to either discredit the findings, and or scheming a way to save their own asses should the findings be undeniable.
And by the way, when XMRV was found to be in some prostate cancer patients, did the world wait for the CDC to replicate those findings?
I am encouraged to see independent research sprouting up in Norway and arg, now I have forgotten where else. So, even if the CDC does 'decide' they cannot replicate the findings, they will have a harder time explaining to the world why their study is 'the accurate' one. And what happens if/when the findings are not our best hope? I don't know. That does keep me awake some. But proof and evidence I can deal with. Snake charmer activity at the CDC level? Not so much.
If we needed advocacy ever, we need it MORE then ever now. So, I continue to help my family and friends get de-programed. I continue to get out here every day I can sit up to type, and make sure we are not squashed anymore. And I pray people do not sit back now with this announcement, thinking, 'Yay, we win!' Because they aren't sitting back in front of Reeve's water cooler at the CDC. You can be sure if they are not finding ways to dis-credit this, they are making sure they can back paddle at the speed of light to save their own skins. And that is what makes the hairs on my neck stand up.
What do we have now that we didn't have in 1991? - the internet. We have power to communicate, organize, and advocate without even leaving our beds. So let's use it!
From KKM, a statement:
http://www.cfids.org/about/kkm-open-letter-dec09.pdf
I don't think anyone but pwME are going to do much in the way of awareness and advocacy for us. I sent one email to all my email contacts asking them to email their reps etc. But that's about it. If you still want to do some advocacy, and I hope you do, I think working with other pwME is our best shot. There are alot of us. Maybe looking at the different existing internet presences and orgs and seeing what they have in the way of advocacy and maybe pitching in to help or starting the advocacy part of the org or starting a website or blog in the mecfscommunity on ning.com or elsewhere. This is what i'd like to do, but am taking it slow bc of being sick! There is plenty we can do to advocate. We might be able to work together on this. The internet is our most powerful weapon; this is why cdc cautions physicians in it's continuing medical education material on ME to direct patients to 'reliable' sources of info like CDC and away from all the 'unreliable' sources of info on the internet to which we usually go!
btw props to WPI for putting links to what it rightly calls "reliable sources" and noticeably not listing CDC, NIH, UK govt and CFIDS Assoc of Am.
Good luck and thanks for your efforts!
You're so...so... hateful !
...I think I love you :)
of the CFS patient from that time. I could not understand why there was no support, no diagnostic testing, the constant sinister physician revelation that they "felt" a psychiatrist/psychologist could help me.
In 1986, I was given a mag article about the "yuppie disease" in Tahoe. I made an appt. at UCSF and was told that I had EBV/CFS and that was it! No treatment. No reccommendations. I had wanted to be an attorney and it took me four more yrs. to realize that I could not do the work and put that goal aside. I continued to work after being turned down for Disability, but worked only six hrs. per day as a glamourized telemarketer. It is very sad that when I look back and feel how my life feels "so scrapped" but I have tried to stay optomistic and at 61 I feel better, never ended in a wheel chair (always my fear), but the relationships lost, the opportunities unfulfilled, sad... thank you for your work and I just managed to finish Osler's Web. Fantastic!
I'm glad you were able to read OW eventually. I hope you enjoyed the discussion of the Stanford infectious disease specialist who kept a placard on his desk, "If you can't dazzle 'em with brilliance, baffle 'em with bullshit." He was a great disbeliever in a biomedical explanation for CFS and ended up hurting a lot of people. Your description of opportunities unfulfilled, relationships lost is so familiar, it IS the typical CFS "bio." Sorry for all that, but great to know you are doing somewhat better at 61. You have survived this disease, a huge achievement in itself. Keep surviving and treasuring each day if you can.
Best wishes,