Check out a new comment on the "You Can't Fix Stupid" post by Sharon Stapleton.
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Inside the Labyrinth: Osler's Web UpdatesYOU CAN'T FIX STUPID (Stone)August 1, 2010 The Centers for Disease Control's research publications about its 1988 invention, "chronic fatigue syndrome," routinely ascribe varieties of mental illness and social and genetic inferiority upon a population of Americans the CDC claims numbers 4 million or more. These assumptions bear little resemblance to findings reported in the vast majority of mainstream scientific papers, likely because mainstream scientists are investigating a real disease, unlike CDC. Nevertheless, the influence of CDC research has been disproportionate, resulting in a lack of medical care and medical research, marginalization, progressive ill health leading to death and a remarkably high suicide rate among individuals so described. Do CDC's publications on so-called "chronic fatigue syndrome" constitute hate crimes? "A hate crime is usually defined by state law as one that involves threats, harassment, or physical harm and is motivated by prejudice against someone's race, color, religion, national origin, ethnicity, sexual orientation or physical or mental disability. Laws vary by state and if hate crimes are provided for by statute, the definitions of hate crimes and penalties imposed vary. States that have hate crime statutes provide harsher penalties for such offenses..." (link) The CDC's latest contribution to it's collection of journal articles on chronic fatigue syndrome is called, "Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study." Its authors are Nater UM, Jones JF, Lin JM, Maloney E, Reeves WC, Heim C. These authors conclude: Our results suggest that CFS is associated with an increased prevalence of maladaptive personality features and personality disorders. This might be associated with being noncompliant with treatment suggestions, displaying unhealthy behavioral strategies and lacking a stable social environment... What passes for scientific research at the Centers for Disease Control has changed little in 25 years; what has changed is that, increasingly, patients are aware of the scam and have myriad ways to make their views public. In commemoration of this welcome transformation of the landscape, I've compiled a sampling of reactions to the CDC's latest study from the Phoenix Rising Forum that I really enjoyed for their humor and passion and thought others might enjoy, as well. Because I pulled a number of these quotes out of context in order to create a flow of remarks on a single theme, I thought it best to avoid naming individual speakers. This collection of partial quotes--outbursts, knowing barbs and pleas for reason--felt to me like a Greek chorus responding to a humanitarian disaster of nearly three decades. I edited these quotes from a series of comments by anciendaze, V99, Judderwocky, Esther12, Robyn, Tammie, muffin, CBS, Sickofcfs, Graeme, ixchelkali, Revda, firefly, beesknees, shiso, Mya Symons, jspotila, Stone, Katimoomoo, and oceanblue during an on-line exchange that took place from July 28 to July 31: "CDC, at it again." "Down with CDC." "They're digging their own grave." "I'm glad to see them digging their own grave...I'm too tired to do it." "We will bring the CDC down" "We cannot be controlled." "…repulsive, quacky bullshit…" "AAARRRgh…" "The media should give them s…" "..looks like open war to me…" "And the CAA’s thoughts on all this would be???" "…the [CDC’s] only way out is to really annihilate any credibility we have whatsoever…" "William Reeves is a sociopath." "Don’t think for a moment that the CDC is benign!" "This whole thing makes no sense." "These people are so crazy, it scares me." "Don’t mistake them as crazy. This is straight slander parading as science..." "BTW, who published this BS?" "WTF is ISF?...Insufficient Fatigue?...It sounds like something I might want." "These people put the babble in psychobabble…It’s clear they don’t know their post from their ergo." "They spare nothing in this pursuit...they can cause the death of others without conscience." "Okay—who publishes this garbage? Who peer reviews it?" "...even insisting we are sane can be used as evidence of personality disorders." "Fracking Imbeciles." "Maybe we need a patient advocacy organization..." "...my mind is screaming at me that I have to be asleep and in a nightmare." "I would love to know how Reeves would answer these questions: Have other people accused you of being cruel to animals and other people?...Do you tend to lie a lot?..Have others accused you of being arrogant?" "Doesn't someone, somewhere in the government realize that…a CDC study like this causes affirmative, tangible downstream harm to very sick, financially-strained, formerly very productive…fellow humans for the reason stated above? Does that not matter in some kind of absolute moral sense?" "I think the very fact that the CDC is spending money studying so-called "personality disorders" at all in CFS in 2010 is a problem…" "What is it going to take for you to stop doing this to us?" "Do not look to the CAA, they can't or won't help." "...I do have to say that comments like this do NOTHING to encourage the engagement of the Association with this message board." "WE MUST FIGHT our own battles now." "We cannot let the CDC get away with this." "This little game really needs the attention of Congress and others at very high levels and with true power - not Sebelius [Kathleen Sebelius, Secretary of the Department of Health and Human Services], she seems worthless." "This whole study is a matter of supporting opinions with reference to other opinions, which are also short of validation….This is characteristic of groups who simply generate paper and judge results by weight." "I now see what those rats have done. Amazing how they're putting our tax dollars to work. Excuse me, I gotta throw up now." "You can’t fix stupid." "…arguments are rarely put forward at all: the cowardly circularity of it creates a sheen of respectability for those who only read a couple of papers, but there's nothing more there than the prejudices of a group of researchers that we had started with 30 years ago." "I can’t believe they are even trying this…" "To be fair to them, in their paper they do admit to most of the reasons their study is rubbish." "Wouldn't it be great if you read research (that) told you new things about the illness, rather than about the views and shortcomings of the researchers? I know, just a dream." (The study's lead author was Christine Heim; for more on Christine Heim, please see my post on her publication of last summer, "New Perspective on Chronic Fatigue Syndrome: Lessons from Developmental Neuroscience," in a journal called "Future Neurology.") OSLER'S WEB REVIEWED IN AGE OF AUTISMJuly 8, 2010
Autism parents, many of whom are proud to call themselves "warriors" as I learned when I attended the Autism One conference in Chicago last month, are angry and organized and smart.
So, I was delighted when I learned that Kent Heckenlively, Esq. who is a contributing editor to the on-line newspaper Age of Autism, reviewed my book Osler's Web today for that online journal. Heckenlively and I talked a lot at the conference. I suggested there needed to be greater cross pollination between two very distressed communities of people--parents who are advocates for their autistic children, and sufferers of M.E. He agreed. The former may have a few things to teach the latter about activism, for instance. There is also, as the history of all successful movements for human justice has demonstrated, power in numbers and solidarity. Both constituencies have been shoved to the fringes, their concerns dismissed and denigrated by the federal government's health bureaucracy, even held up to ridicule, and yet, the epidemics of both diseases continue to rage unabated. Further, speculation that there may be scientific connections between these terrible diseases has been tantalizing in recent years. (more…) RUBBER MEETS ROAD Copyright (C) 2010 by Hillary Johnson. All Rights Reserved. Permission to repost not granted.June 30, 2010 I’m not going to try to parse and recount every detail of what’s been going on in recent days. There’s been a lot of reporting and blogging and commenting in this country and in Europe, particularly in the Netherlands, and it’s all been vital, fascinating and important. Nevertheless, seeing as the Centers for Disease Control, that ever-defiant, outlying arm of the federal health bureaucracy, and top tier bureaucrats inside the Public Health Service (or should it be known as America’s Kremlin?) are arbitrarily sending an important research paper out for additional review on the eve of it's publication, I feel compelled this July 4th weekend--when we traditionally celebrate the origins of our democracy—to comment. And because we live in a democracy, I am able to publish my observations and opinions (through the magic of the Internet), without being censored or suppressed or forced to issue statements that have been written for me by government administrators or their public relations staffs, nor am I being told by powerful people who are also my employers that I cannot publish my words. This was never going to be easy, but who could have imagined the depths to which the government would sink to protect the reputation of the country’s famous disease control agency? Or to keep the Big Lie going about that agency’s invention, “chronic fatigue syndrome”? (more…) THE LEAST EXCITABLE BUT ALWAYS RELIABLE, "CFS REPORT"June 23, 2010
Take a look at the CFS Report, one of my favorite websites, and thanks to Jay Spero for posting the link on Facebook.
The Big OneJune 22, 2010
I received a call today from an investigator at a major American university who is involved with XMRV research. He is the second reseacher-scientist to have advised me in as many weeks that a major research paper is about to be published in which the conclusions reached by the authors of the Science paper of October 9, 2009--which linked the gammaretrovirus XMRV to chronic fatigue syndrome and proved it was infectious--have been replicated. In addition, the new data may be even stronger. In other words, the positivity rate among chronic fatigue syndrome patients may be significantly higher. In addition, silent or latent infections in the general population may be, in this new data, as much as twice as high as originally reported in Science.
The agencies involved are the Food and Drug Administration and the National Institutes of Health. The paper is currently in press at a highly respected journal. There initially was some concern that senior staff at the Centers for Disease Control might try to suppress this paper by intimidating the editors at the journal. My source today scoffed at that notion and suggested the prestige of the journal is such that any effort to squelch the data would be quite difficult. At least one of the investigators involved in this new study has had a long-standing interest in the etiology of chronic fatigue syndrome. The scientists who collaborated on this new study did their work entirely independently of the authors of last October's groundbreaking Science paper. Now comes this press release today from the Netherlands, titled, "FDA and NIH confirm 'XMRV' Findings." Here is the link to the press release. WE'LL ALWAYS HAVE CHICAGO...Copyright (C) 2010, Hillary Johnson, All Rights Reserved; Permission to Re-post Not GrantedJune 8, 2010
I was in Chicago over the Memorial Day Weekend at the big annual Autism One conference. Imagine an IACFS conference, except there are about five times as many people, maybe more--Let's say at least 1,000 at any given time. It's six days long and there are presentations beginning at 7 a.m. and running to 6 p.m. and they're taking place in a couple of ballrooms and several smaller amphitheatres. No grown ups are lying down, resembling corpses, on the floor in the back of the room. Nobody's using wheelchairs. The energy level feels off the charts (super-charged, no doubt, by an in-hotel Starbucks you must pass to get from A to B).
Here's the killer part:. (more…) SIF-SAC, AGAINMay 10, 2010
I recently heard "blogging" defined as thinking out loud, and that's all I have time for or intend to do here. I watched some, but not all, of today's Sif-Sac meeting on my computer screen today. I was really impressed that nobody cried for once--at least, not in public or not that I observed. That's progress.
(more…) RE-POST; ANTHONY FAUCIApril 17, 2010
Word comes from the UK of Pamela Weston’s assisted suicide at the Dignitas clinic in Zurich, Switzerland. Weston, in a letter written before she died, described her eighteen year nightmare of M.E., which began with a flu-like malady in August, 1991.
“I can no longer write professionally any more. There is nothing else I want to do. Nothing else I can do. I am too weak, too tired.” She described her “happy life" as a classical musician, teacher and writer up to the day she fell ill. “…ME put a stop to all that,” she wrote. During her 18 years of illness, years during which she experienced a decline that resulted in no fewer than four heart attacks in her final two years, she was offered little by way of treatment, what she was offered did not help, and she suffered the double insult of being caught up in a mass delusion fostered by psychiatrist-quacks in England and the U.S. that her disease was psychological. “I’ve had a wonderful, happy life. Now it's over. What I want now is for campaigners, such as Action for M.E, to use my story to push the Government hard on medical research,” Weston wrote sometime before she took barbiturates on September 9, 2009. Who is responsible for the 25-year horror movie that is the story of this disease? I’m offering, for your consideration, some of the major players in the drama, letting you know, if you didn’t know, a few of the things they said and did along the way. I offer these names with a caveat—given time and space constraints, it’s impossible to cover the waterfront, and what’s below is merely a taste of the activities these people engaged in that prevented resolution of this disease for a generation, leaving millions around the world to rot in bed for decades, or die of cancer or heart failure twenty years before their time, or choose death over life. Here, for your consideration, are some of the guilty parties. I leave any discussion of motive to the reader and will say only that although most of these people are scientists, scientific considerations have never been paramount or even apparently part of their thought processes. • Since 1984, director of the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH in Bethesda. Member of the National Academy of Sciences. Between 1996 and 2006, the tenth most cited AIDS-HIV researcher. *Close friend and ardent supporter of NIAID’s Stephen Straus, the internationally influential architect of the psychoneurotic theory of “chronic fatigue syndrome." (Straus died in May 2007.) • Considered the American “AIDS Czar” and the recipient, for his institute, of billions of dollars for AIDS research. For the year 2009, Fauci's budget was $4.7 billion. • The person who advised NIH director Harold Varmus in 1999 to move “chronic fatigue syndrome” out of NIAID and into the dead zone of the ineffectual and unfunded Office of Research on Women’s Health at NIH, a stunningly irresponsible and cynical decision. Fauci made this move on the heels of a General Accounting Office report critical of the NIH's history in "cfs." (more…) |
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