Did your mother ever say things to you like that when you were growing up?
My mother did.
I couldn't help thinking of my mother's admonition when I saw the headline from the July 14, 2012 issue of The New York Times "Vast F.D.A. Effort Tracked E-Mails of its Scientists." The headline does a good job of explaining what happened, but I thought I'd let the lead paragraph give you a little flavor of the piece.
"A wide-ranging surveillance operation by the Food and Drug Administration against a group of its own scientists used an enemies list of sorts as it secretly captured thousands of e-mails that the disgruntled scientists sent privately to members of Congress, lawyers, labor officials, journalists, and even President Obama, previously undisclosed records show."
Let that swirl around in your brain for a moment. Some F.D.A. official says to himself, "I don't think those scientists can be trusted. Let's track their e-mails." The spy software used captured screen images from government laptops of five scientists, tracked their keystrokes, intercepted personal e-mails, copied documents from their personal thumb drives, and even followed messages as they were being composed.
The article also states, "many Congressional staff members regarded as sympathetic to the scientists each got their own files containing all their e-mails to and from the whistle-blowers." Congressman Chris Van Hollen, a Democrat from Maryland was listed as No. 14 on the F. D. A. surveillance list. A former staff member to Senator Charles Grassley, an Iowa Republican was also on the list.
The program grew out of a dispute that several scientists had regarding what the scientists claim were faulty review procedures which led to the approval of medical imaging devices for mammograms and colonoscopies. The concern was that patients were being exposed to dangerous levels of radiation. Four of these scientists were fired from the F. D. A.
By Kent Heckenlively
In a sign of increasing political strength, the Canary Party has achieved an alliance with the East Bay Tea Party, one of California’s largest tea party groups, on the issue of AB2109, a measure sponsored by California Assembly Member, Dr. Richard Pan. The bill seeks to limit the ability of parents to obtain a philosophical exemption to refuse a vaccine or modify the schedule by requiring them to get a note from a doctor if they wish to vary the schedule or chose to decline vaccinations.
Both the East Bay Tea Party and the Canary Party believe this is an unwarranted governmental intrusion on the rights of parents and the first step in a program of mandated vaccines. Not only would this be the first time in California history that the right to refuse a medical procedure which carries the risk of injury or death would be dependent on a non-neutral third party who is not compelled by law to sign the required form, it is also likely to be a violation of the First Amendment of the U. S. Constitution and a violation of several sections of the California Education Code.
While the Canary Party seeks to be a non-partisan group interested in the health rights of our society and full and rigorous scientific research in the health risks of medical treatments and the unintended consequences of new chemicals introduced into our environment, we must be willing to join with more partisan organizations if they share our values on these issues. In California it is regrettable that the democratic members of the assembly support this bill while the republican members oppose it. But those are the facts on the ground and we must accept conditions as we find them and act accordingly. We hope that the democrats will reconsider their position.
I was saddened but not surprised to attend a meeting of the Core Council of the East Bay Tea Party and hear one of their leading members talk about how his daughter, a nurse, was compelled by her doctor to get a flu shot as a condition of employment, and developed Guillan-Barre syndrome. And while this was certainly regrettable, it reveals that those waking up to the true risks of the current vaccine program are more and more widespread, and it underscored the importance of the vaccine safety issue to all members of society. The leaders of the East Bay Tea Party also viewed the film “The Greater Good” within a week of my giving it to them and came back with excellent questions and comments.
I was most gratified to have the East Bay Tea Party agree to take on advocacy of this issue through their web-site and e-mail alerts to their members. You can view what they have put up in support of this joint effort HERE.
In addition, I am working closely with a member of the Core Council in order to craft a message to take to national Tea Party organizations. I encourage all parents and those interested in the issue of vaccine safety to work with whatever organizations in their community might be supportive of these efforts. And if you are a democrat, I strongly encourage you to contact your party and tell them to get on the right side of AB2109 as well.
Kent Heckenlively is Contributing Editor for Age of Autism.
There is a most curious interview with Dr. Ian Lipkin in the April 2012 issue of Discover magazine entitled "In the Lab with the World's Greatest Virus Hunter". I can't help but notice that Dr. Lipkin, director of the Center for Infection and Immunity at Columbia University's Mailman School of Public Health and the scientist who first identified West Nile Virus sounds more like a bio-med autism parent than a CDC spokesman who claims that while we don't know what causes autism, "we're sure it's not vaccines."
Many will no doubt remember it was Lipkin's study which supposedly disproved the work of Dr. Andrew Wakefield regarding the persistence of the vaccine strain of the measles in the gut of children with autism. And it's certainly true that Lipkin has done little to counter that impression.
However, a closer look at Lipkin's study reveals a more complicated picture. Lipkin used the same lab as Wakefield and did identify the measles virus from one of the children with autism he studied. The patient selection criteria was significantly different than that used by Wakefield, and as I have written previously, Lipkin has recently used Wakefield's research in the footnotes to his recent article showing that different bacterial colonies are present in the guts of children with autism. If Wakefield's research was so dishonest, why would Lipkin ever cite him?
Perhaps all this has set the stage for a conversion on the question of autism, similar to that of the apostle Paul, a former Christian hunter who after having a vision of Christ on the Road to Damascus, became one of the founders of the early Church. For as much as Dr. Lipkin took the wrong road in regards to Dr. Wakefield's work, there has also been evidence of an exceptionally humane side to the man.
When Dr. Mady Horning released her study showing that the neurotoxic effects of thimerosal in mice were dependent upon a certain genetic profile, the autism community worried that the long knives were out for her. This could explain why only certain infants were harmed by the thimerosal in vaccines and not others. Dr. Horning was sheltered by Dr. Ian Lipkin who made her his research partner, probably saving her academic career in the process.
Recently I've come across Lipkin in the controversy over the XMRV retrovirus and its possible link to both ME/chronic fatigue syndrome and autism. When the situation with Dr. Judy Mikovits and the Whittemore-Peterson Institute fell apart, Dr. Lipkin had the power to determine whether the research would continue. I am told by sources that Dr. Lipkin was actually threatened with legal action by various entities and he told them to take a hike. Instead of succumbing to this pressure, he put Drs. Mikovits, Frank Ruscetti of the National Cancer Institute and discoverer of the first human retrovirus, as well as Jose Montoya of Stanford University, and others in charge of determining the possible link between XMRV (or a related human retrovirus) and these diseases.
Lipkin's willingness to remain agnostic on the question of XMRV (or other related human retroviruses) opens up some other possibilities into how a retrovirus could cause conditions like ME/chronic fatigue syndrome and autism. A virus or other pathogen may cause collateral damage that is not simply due to the infection, but how the body responds to the pathogen.
From the Discover magazine interview of April 2012:
Have we reached the point where we can link specific infections to specific psychiatric disorders?
No, the connection is much more complex. When I worked with LCMV, it became clear that any sort of pertubation could damage the nervous system. Nerves find their way to specific locations through signposts that are part of the immune system. And if you increase immunological molecules of certain types, a nerve may jog this way as opposed to the way it's supposed to go. It may not make a difference what the infectious agent is-bacterial, viral, or parasitic.
Last weekend we went to a baptism.
It was for the grandaughter of Awetash, the woman who was our son's nanny for several years. When our son Ben was born we were in the thick of the fight with our daughter Jacqueline's seizure disorder, navigating this new world of sickness, cycling through pheno-barbitol, prednisone, and depakote, desperately trying to find something to stop the nearly eighty seizures a day she was having.
My wife was concerned we wouldn't be able to find a person to help care for Jacqueline while she attended to our newborn son. I came up with a solution. "What if we advertised for somebody to help with Ben? Then we could focus on Jacqueline."
Yes, it was a terrible choice to make, but also one that was ruthlessly practical, like the surgeon making decisions in a triage unit. It would be so much easier to find someone to work with a newborn than with the screaming, biting, could barely walk, constant diarrhea wreck that was our two-year-old daughter.
And then into our lives came Awetash, one of the strongest, kindest people I I have ever met. In so many ways she would remind me that the lives of others are often a struggle beyond our capacity to imagine. And yet every day we are given a choice as to how to respond to these challenges.
Awetash came from Eritrea, a country that was once part of Ethiopia. At the time she came to work for us the two countries were still in the midst of a decades-long civil war. Awetash was new to the United States when she came to interview and was accompanied by her sister who had been in the country for a few years. The sister's English was much better and I was struck by the sister's sense of quiet authority. It was only later I learned Awetash's sister had been a commander in the Eritrean rebel army.
The chaos which was our house didn't seem to trouble Awetash. She was always on-time, never complained, and appeared to consider us her number one priority. And she was learning how to make her way in this new land.
Every few weeks my wife would notice that Awetash had purchased a new necklace, a pretty blouse, a stylish pant suit. When she became aware of a city program for better housing for low-income people she applied for it and got a new place to live.
And as we got to know Awetash we learned more of her story. She had three children back home in Eritrea and was trying to get them into the United States. Previously she'd worked as a nanny in Saudia Arabia, a country which has a well-deserved reputation for mistreating their domestic workers. She eventually decided to flee from the family when they were on vacation in the United States.
Awetash was told she should make her escape at the airport as the family was getting ready to depart back to Saudi Arabia. A man she did not know would approach her and tell her it was time. She was to walk immediately out of the airport where another man in a car would be waiting. She was to ask no questions, get in, and the car would drive away.
But as much as Awetash was a rebel, she wanted to do everything right. She immediately applied for asylum in the United States and waited patiently for her paperwork to come through. And Awetash had a long-term plan. She wanted to get her children into the United States as well.
So there we were together, both of us with lost children. Awetash with hers stuck in a country wracked by civil war, and us with one right in front of us, but who had vanished into autism.
The Reno Gazette-Journal and the Las Vegas Review Journal are both reporting that Harvey and Annette Whittemore, founders of the Whittemore-Peterson Institute for Neuro-Immune Diseases at the University of Nevada/Reno have been sued by their former business partners for embezzlement in the amount of more than 40 million dollars. The articles can be accessed HERE.
This development may have an enormous impact on the ME/CFS community (myalgic encephelomyelitis/chronic fatigue syndrome) and also end up being of great importance to the autism community.
The readers of this blog will no doubt be aware that Dr. Judy Mikovits, the former research director of the Whittemore-Peterson Institute presented information at a poster session of the First International Conference on XMRV in September of 2010 that in a small study 14 out of 17 children with autism, who had parents with ME/CFS, tested positive for signs of a retroviral infection. (This was in addition to her reporting that 66 out of 101 patients with ME/CFS showed signs of retroviral infection. The research was published in the journal Science. It has since been retracted, although further research is continuing, and the controversy shows little sign of abating.)
The first thing we do, let's kill all the lawyers. - Henry VI - Shakespeare
This line even got a laugh in Shakespeare's time. But it's important to understand the context. Henry VI was planning a revolution and didn't want the lawyers to slow him down. If knocking off the lawyers is the sign of a planned revolution, then the pharmaceutical industry has done a pretty good job so far.
Dr. Wakefield's complaint against the British Medical Journal, Brian Deer, and Fiona Godlee for defamation can be best understood as the first stirrings of a counter-revolution.
Let me back up and explain.
I think it's incredibly difficult to create a legal system which can successfully resist the various pressures put upon it. That's why the creators of the Anglo-American justice system put such a premium on a system of checks and balances, instituted an advocacy system, and established rules of discovery. They expected people to be flawed. They expected undue pressures and prejudices to be placed upon the proceedings at some point. They anticipated that people's opinions would inevitably color their judgments and tried to make adjustments. They understood the truth was most likely to come out when both sides were able to present their strongest case. You get to confront your accusers. You get to put on your best witnesses. The other side needs to divulge their darkest secrets.
It's a rare autism book which wins praise from figures as diverse as Tom Brokaw, Jenny McCarthy, Temple Grandin, and Suzanne Wright, co-founder of Autism Speaks.
But that's exactly what writers Virginia Breen and her daughter, Elizabeth Bonker, a thirteen-year-old girl with autism have accomplished with their book, I Am in Here.
For those of us with a child who is still non-verbal despite all of our best efforts this book is akin to a glass of cool, refreshing water in the midst of a burning desert. Elizabeth cannot speak, but has learned how to communicate using the rapid prompting method created by Soma Mukhopadhyay. Elizabeth has also learned to use the computer and often types out short poems to communicate how she's feeling. For parents who wonder, and hope that something beautiful exists within our mute children, her words are nothing less than an answered prayer.
In the poem "Me" which opens up the second chapter she writes of her frustration that she goes to every extreme to try and express her need to talk, and how she wants people to know she is conscious and aware, even though she can't speak. In the explanation which accompanies her poem she says, "I wrote "Me" to let people know that even though I don't speak, I feel and understand the world around me. I want to be heard and respected. I want that for everyone, especially for people like me."
A doctor once asked me what I wanted for my daughter. A number of possibilities sprang to mind. I could have said I wanted her to be potty-trained, ride a bike, have a meal in a restaurant, but instead my fondest wish was for something else. "Someday I want to have a conversation with my daughter," was my reply.
Until that day arrives, Elizabeth and Virginia's book lets me imagine that conversation.
I think that we have not cared for people with ME (myalgic encephelomyelitis, otherwise known as chronic fatigue syndrome) to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." - Apology from the Norwegian Directorate of Health on publication of a study showing that the cancer drug rituximab is effective in the treatment of chronic fatigue syndrome/ME.
What was reason for this unprecedented apology from the public health authorities in Norway?
It was the publication of a study which showed that the drug rituximab improved the health of 10 of 15 patients (67%) with chronic fatigue syndrome/ME and that 2 of the 15 patients given the drug staged a complete recovery from their condition. You can read about the study in Medscape.
Why is this important to the autism community?
It's important because chronic fatigue syndrome/ME and autism share many common clinical indicators, including immune disregulation, increased oxidative stress, heavy metal retention, co-infection by other pathogens, and mitichondrial insufficiency. What is effective in treating chronic fatigue syndrome/ME may end up having some relevance to treatments for autism. I have written before about my daughter with autism having tested positive for XMRV. You can read my previous article for background on XMRV.
The researchers I have spoken with about XMRV and autism have told me their suspicion that the retrovirus likes to enter B cells which have the CD20 receptor. They also suspect that it isn't the retrovirus itself which is doing the harm, but the toxins or auto-antibodies which are produced in response to the retrovirus. Rituximab specifically targets those B cells which have the CD20 receptor. It is a very targeted type of chemotherapy, although it is not without significant risks.
B cells are part of the immune system, but when they go haywire they may cause cancer, or diseases like rheumatoid arthritis. Rituximab is approved for the treatment of rheumatoid arthritis and many types of lymphoma.
The question of why rituximab's depletion of B cells helps those with chronic fatigue syndrome/ME remains unexplained. The researchers specifically noted they had searched for XMRV and not found evidence of its presence, but that touches on the greater issue of whether the currently validated test for XMRV is accurate.
Although my daughter is not a patient of Dr. Jeff Bradstreet I've always had an enormous amount of respect for the good doctor. I'll usually go on his website once or twice a month to find out what has most recently attracted his interest. Often it seems we're looking at similar questions; which either means great minds think alike, or we suffer from some of the same delusions.
I was intrigued by his October 11, 2011 entry, "An Update on Viral Issue in Autism" since it dovetailed with some of my own recent investigations.
In the past months Dr. Bradstreet has become interested in nagalese, which he describes as an enzyme "produced by cancer cells and viruses." He thinks it unlikely that children with autism have undiagnosed cancers, and thus suspicion falls on a viral etiology. Dr. Bradstreet writes, "Viruses make the nagalese enzyme as part of their attachment proteins. It serves to get the virus into the cell and also decreases the body's immune reaction to the virus-thereby increasing the odds of viral survival."
Further on Dr. Bradstreet writes, "It is reasonable and likely that the nature of the immune dysfunction and the frequently observed autoimmune problems in autism are mediated by persistent, unresolved viral infections." He claims to have tested approximately 400 children with autism for the viral marker, nagalese, and found that nearly 80% have significantly elevated levels. He hopes to publish soon on this study and believes this information "is one of the most important developments in the clinical treatment of children on the spectrum that I have experienced in the last 15 years."
No responsible historian quotes Unabomber Ted Kaczynski for a proper understanding of the Industrial Revolution and the struggles of a technological age.
So why is uber-scientist Dr. W. Ian Lipkin of Columbia University quoting with approval the work of Dr. Andrew Wakefield? Isn't Wakefield supposed to the author of our common mass delusion that vaccines are linked to autism?
And wasn't it Dr. W. Ian Lipkin who wrote Lack of Association Between Measles Virus Vaccine and Enteropathy: A Case Control Study in September 2008 which was widely seen as the final "nail in the coffin" of the MMR vaccine/autism theory? (Author's note - Lipkin's study also showed that the lab work of Dr. John O'Leary, relied upon by Dr. Wakefield, was accurate. And little reported was the fact that the measles virus was detected in the gut tissue of 1 of the 25 children with autism and 1 control. Perhaps the most serious critcism, and difference from the Wakefield study was that only 5 of the 25 children with autism had received their MMR shot prior to the start of gastrointestinal problems, according to parent reports. The parents of all Wakefield's patients in the original Lancet study claimed that the development of GI symptoms came after the MMR shot. That's why he was investigating the shots as a possible cause of the development of GI symptoms AND as a consequence, autism.)
Or to put it a little more clearly, even Dr. W. Ian Lipkin found 20% of the children whose parents claimed that the MMR shot preceeded the development of GI symptoms in their children with autism were positive for the measles virus in their gut.
As a good portion of the medical and media world is furiously attempting to bury the XMRV story a few intrepid researchers appear not to have gotten the memo.
Scientists from the Food and Drug Administration, the National Institutes of Health, and the Department of Health and Human Services are busily trying to figure out how this retrovirus may be involved in conditions such as chronic fatigue syndrome/ME. (I have written before of how my daughter with autism, my wife, and my mother-in-law have all tested positive for this retrovirus.) You can read my previous article HERE.
In an article entitled "Susceptibility of Human Primary Neuronal Cells to Xenotropic Murine Leukemia Virus-related (XMRV) Virus Infection," and published in the Journal of Virology, September 20, 2011 HERE the authors tried to answer the question of whether XMRV could be responsible for inflammation in the brain.
From the findings section the authors wrote, "XMRV has been associated with prostate cancer and CFS. Although CFS patients show many symptoms for inflammation in brain, there is no report about the presence of XMRV in the brain of CFS patients. In an effort to determine the susceptibility of neuronal cells to XMRV in-vitro, we used human primary Progenitors, Progenitor Derived Neurons (PDN), and Progenitor Derived Astrocytes (PDA)."
Translation - CFS patients show evidence of brain inflammation (just like kids with autism), but nobody's looked to see if it might be due to XMRV. We wondered if brain cells were susceptible to infection by XMRV.
In order to answer the question of how XMRV could cross the blood-brain barrier the authors noted, "T-cell traffic into the central nervous system is thought to occur when activated T-cells cross the blood-brain barrier. The T-cells presumably act as a "Trojan horse" to store and transport infectious materials across the blood-brain barrier. This "Trojan horse" hypothesis has been well established in the pathogenesis of many viruses that infect the central nervous system. Based on the assumption that XMRV infected lymphocytes could infiltrate and infect the neuronal cells, we conducted an in-vitro coinfection/co-culture study using XMRV-infected Jurkat cells with neuronal cells."
Mikovits has her own theory about when Coffin changed his mind. She and Lombardi had found evidence, not included in the Science paper, that XMRV was linked to autism. On 11 November 2009, Lombardi presented those data at a meeting at the Cleveland Clinic. "You don't talk about autism in the U.S.-it's too politically charged," Mikovits claims Coffin told him. She believes Coffin turned against her that very day. Coffin confirms he was upset that Lombardi presented such preliminary data on such a fraught topic but says, "I did not 'turn against' Judy at that or any other point." (Author's note - Dr. John Coffin is an influential member of the National Academy of Sciences. He originally wrote an article in support of the October 2009 Science article by Dr. Judy Mikovits and others, showing an association between the XMRV retrovirus and chronic fatigue syndrome/ME, but has since turned against the theory. The reasons for this change of heart remain in dispute.)
Science, September 23, 2011, False Positive by Jon Cohen and Martin Enserlik
I'm glad this is out in the open. I've heard this privately for more than a year and now nobody can accuse me of making things up. It's in the public record. I know I wasn't at the meeting so I can't comment as to the accuracy of the claim, but the lawyer in me can't help making a couple of observations.
Both Dr. Mikovits and Dr. Coffin admit there was a meeting at the Cleveland Clinic on November 11, 2009 in which Dr. Vince Lombardi discussed information they had linking autism to infection by the XMRV retrovirus. For background on the XMRV/autism connection you can read my article HERE.
Coffin admits that "he was upset that Lombardi presented such preliminary data on such a fraught topic."
Which leads me to the inevitable question, why?
No members of the press were present. Nobody put out a press release. It was simply a private conversation between medical collaborators of the possibility that autism, the number one developmental disability among children, that disease which is twenty times more prevalent than polio ever was, could possibly be linked to a retrovirus, just as AIDS is linked to HIV. Isn't that the way responsible medical researchers are supposed to act?
But something about the possibility that autism could be linked to a retrovirus made John Coffin by his own admission "upset." Could it be that if autism was linked to a retrovirus, and it behaved like HIV, that any stimulation of the immune system, by say a vaccine, could cause the retrovirus to replicate out of control and cause problems? You can read my article on this subject where the UCSF Pediatric AIDS Department told me the same thing and you can also read it on their website. HERE
And while the attacks on Dr. Mikovits paint her as a zealot, here's what Dr. Coffin has to say about her in the same article. "I began comparing Judy Mikovits to Joan of Arc. The scientists will burn her at the stake, but her faithful following will have her canonized."
Is it just me or is there something a little unusual about a scientist who makes such comments about another scientist?
And the former English major in me can't help but be struck by how Coffin compares his fellow scientists to those who would burn a woman at the stake. Does anybody need to tell Coffin that burning dangerous women at the stake went out of vogue a few centuries ago? Could he have used a diferent analogy? Has anybody made a complaint to the National Organization of Women?
So, while Coffin is comparing Dr. Mikovits to Joan of Arc, here's how Dr. Mikovits responds to the criticism, "I don't care if nobody else in the world wants to work on it!" Mikovits exclaimed at one point, rolling her eyes. "Fine, leave us alone."
Who seems like the professional scientist to you?
The article also doesn't give full credit to Dr. Mikovits partner, Dr. Francis Ruscetti. About Ruscetti the article only notes, "She soon enlisted Ruscetti, who had worked in Gallo's lab when it discovered HTLV-1 . . ."
Dr. Francis Ruscetti is currently Head of the Leukocyte Biology Section, Laboratory of Experimental Biology at the National Cancer Institute in Frederick, Maryland. He had not simply "worked" in Gallo's lab when HTLV-1 was discovered, he was one of the two people who isolated HTLV-1, the first known human retrovirus, and is regarded as one of the fathers of retrovirology.
And what is all of the ruckus about? It's about a partial retraction of the original article linking XMRV to chronic fatigue syndrome.
My wife often says I'm "the believer" among the two of us. In her mind faith comes easily to me, but when she sees the inequities of the world, the difficulties so many deal with on a daily basis, it's difficult for her to summon much belief in a divine entity.
The truth is I've struggled with faith for years, trying to reconcile various philisophical positions. Why would God let a child be born if they were going to come down with autism? My daughter with autism/seizures is thirteen years old. My son who is neuro-typical is eleven. My daughter's condition is so severe that the four of us have never gone out to a restaurant. We have never been on a family vacation. When I walk in the door after work I know my daughter will probably have been tantrumming for at least a half hour, a condition which is only remedied by putting her in my car, and taking her for a long drive. My wife would ask, where is God in that domestic scene?
Of course the believer in me would start to come up with the counter-arguments. Do we thank God for all of the wonderful things in our life? The fact each of us were born to parents who loved us, we had the means to go to college, the friends we've had in our life, and our level of material wealth which many in the world can only dream of?
And yet this balacing of good and bad in our lives seems somehow the wrong approach. Sometimes everything can go wrong. Do we say God has abandoned us?
Sometimes people will say that in the midst of difficulties we cannot see God's plan in full. That God has planned wonderful things for us, but we often must go through a period of suffering and hardships so the full beauty of that plan can be unveiled. I will confess that sometimes I've seen glimmers of this possibility, and at others it has been difficult to imagine.
Lately I've come to a new approach, one that satisfies my need to believe in a higher power, but also acknowledges the wickedness I often see in the world. For I can call it nothing less than wickedness when the medical community refuses to perform a study of the neurological health of vaccinated and unvaccinated children. It is nothing less than wickedness when those who suffer from chronic fatigue syndrome/ME are told they are not physically ill, but suffer only from a mental illness.
When my daughter's test results showed she was positive for the XMRV (xenotropic murine leukemia virus related virus) retrovirus my next step was to find a doctor who could tell me how to treat it. Since the only other two human retroviruses currently identified are HTLV, found mostly in Asian countries and responsible for causing T-cell leukemia, and HIV, which causes AIDS, I figured I had to find an AIDS doctor.
I called the University of California, San Francisco Pediatric AIDS unit and talked to their media representative. I figured in our first conversation I'd avoid flying my freak flag and simply tell him my daughter had been diagnosed with this newly identified retrovirus and that she had autism and seizures and I was concerned that the retrovirus might be at least partially responsible for her problems.
"Well, that explains why a vaccination might cause autism," he said, barely missing a breath. He went onto tell me this question was something he often discussed with his friends. The idea of an underlying retrovirus was the first time it made sense as to how a vaccination might cause autism.
He explained that if XMRV was similar to HIV then it probably hid out in the cells of the immune system and any stimulation of the immune system was likely to cause XMRV to replicate out of control. (This had previously been discussed by some of the researchers working on XMRV, but I was still surprised to hear the media representative go right to that point.) Apparently it is common knowledge among retrovirologists that immunizations can stimulate a retrovirus. Even the most pro-vaccine physician will admit that vaccinations work by stimulating the immune system.
The media representative was very kind and said he'd try to find a doctor to talk to me. Predictably, none of them wanted to talk to me, and I can't say I'm unsatisfied with that result. The currently existing HIV medications don't hold much appeal to me as I worry about some of their side-effects, particularly on the mitochondria.
I want to win the "Vaccine-Autism War."
It's probably why I spend inordinate amounts of my scarce free time watching History Channel specials on military battles and tactics. The books I read also tend to be about great historical struggles and what eventually happened.
And sometimes I simply can't believe we haven't already won. Consider the facts:
Since the 1980's the number of vaccines children have received have more than tripled, with the majority of them coming in the first eighteen months of life.
The rate of autism has gone from 1 in 10,000 to 1 in 100. At the height of the polio epidemic the numbers were never greater than 1 in 2,000.
A significant and vocal number of parents claim the changes in their child's development came after a vaccination.
And yet the government and medical authorities refuse to conduct the one study, (the neurological differences between fully vaccinated and fully unvaccinated children), that would settle the matter.
I recently read a book, "Mindset" by Dr. Carol Dweck, a professor of psychology at Stanford University, which I believe has relevance to our struggle against the medical community. Sometimes it's not enough to have facts on your side, you have to understand the psychology of the other side and use it yo your advantage.
Dr. Dweck identifies two types of mindsets among people, the "fixed" mindset and the "growth" mindset.
In the fixed mindset a person is motivated by a desire to look smart and therefore has a tendency to avoid challenges, will give up easily when frustrated, and ignores useful negative feedback. How many of you feel that the majority of physicians you've encountered fall into the fixed mindset? Honestly, if you were a physician wouldn't you think children with autism present an amazing diagnostic challenge? From their pale skin, to their gastro-intestinal issues, multiple food allergies, abnormal immune markers, I couldn't think of a greater medical challenge. And as we expect to find some brilliant, if somewhat eccentric physician, like the fictional Dr. Gregory House, who won't let go of a case until he finds the answer, we get a collective shrug, as if we're dealing with some sullen teenager.
As part of my continuing series of articles which I think should be subtitled, Official Documents which Scare the Living Daylights Out of Me! I offer this July 24, 2011 publication from the Food and Drug Adminstration.
The release is entitled Investigating Viruses in Cells Used to make Vaccines; and Evaluating the Potential Threat Posed by Transmission of Viruses to Humans. XMRV is prominently featured as a virus about which they are concerned. Please feel free to read the entire document at FDA.gov.
For those of you who may be unfamiliar with the question of XMRV and autism, please allow me to give a brief recap. The xenotropic murine leukemia virus related virus (XMRV) was discovered in 2006 by scientists working for the University of California at San Francisco and the Cleveland Clinic. It is a human gamma retrovirus and there are many who say we should be referring to this family as XMRVs or HGRVs.
The retrovirus was originally found in the tumors of men with an aggressive form of prostate cancer, in 2009 the virus was found in high numbers in people with chronic fatigue syndrome/ME, and there has been some very preliminary findings of its presence in children with autism. In the interest of full disclosure I must note that my daughter with autism/seizures, my wife who has had a number of mysterious health ailments, and my mother-in-law have all tested positive for the XMRV retrovirus. I've tested negative, as has my father, who is my only surviving parent.
Chronic fatigue syndrome/ME and autism share many common clinical features including immune dysregulation, increased expression of pro-inflammatory cytokines and chemokines, mitochondrial abnormalities, and chronic active microbial infections. In my own investigations I've been surprised how many of the mothers of children with autism say they have either been formally diagnosed with chronic fatigue syndrome/ME, or believe they have subclinical indications of the disorder.
Onto the FDA release of July 24, 2011. After first describing the need for new vaccines and that the virus-based vaccines require the use of living cells for a substrate, there's this paragraph.
In some cases the cell lines that are used might be tumorigenic, that it, they form tumors when injected into rodents. Some of these tumor-forming cell lines may contain cancer-causing (author's note - autism causing?) viruses that are not actively reproducing. Such viruses are hard to detect using standard methods. These latent or "quiet" viruses pose a potential threat, since they might become active under vaccine manufacturing conditions. Therefore, to ensure the safety of vaccines, our laboratory is investigating ways to activate latent viruses in cell lines and to detect the activated viruses, as well as other unknown viruses, using new technologies. We are also trying to identify specific biological processes that reflect virus activity.
Translation for the average reader - Hey, the cell lines in which we grow the viruses we want in vaccines, may contain some viruses we don't want! Including those which may cause cancer!
Managing Editor's Note: Last week, I spoke at a conference in Cleveland. To my great pleasure, Dr. Derrick Lonsdale of Preventive Medicine Group, who was our first Defeat Autism Now! doctor, was also speaking. Dr. Lonsdale is 87 years old, vigorous, (Hugh Hefner should be so good looking) and still devoted to helping people with autism when mainstream medicine turns its back. He has pioneered the use of Vitamin B1 Thiamine for autism. If you've read All I Can Handle I'm No Mother Teresa, you know that our daugher Mia had a life threatening seizure disorder, written off by the doctors at University Hospitals as, "part of her autism." I willl never forget how I called Dr. Lonsdale in tears, sitting next to Mia's hospital bed, begging for help. When she was released, he brought her into his office for an IV infusion of liquid and nutrition to help get her back to health. He cared. He cares. Dr. Lonsdale is an expert in oxidative stress and its chain of sickness. Please visit his blog called The Spark of Life and tell him a very grateful Kim sent you. Below, Kent describes a doctor who tried to help his own daughter. And who recently died.
Has there been a doctor who has reached out to help you when mainstream medicine had nothing to suggest? Let us know in the comments. KS
Dr. David W. Gregg died on July 6, 2011 at the age of seventy-six. He was my friend and an honest scientist.
There's a Bible passage from Matthew which reads, "Let the little children come to me, and do not hinder them; for it is to those who are childlike that the Kingdom of the Heavens belongs."
If you knew David you know he faced the world with a child's innocence, curiousity, and sense of fair play. I have rarely known a better man.
I met David sometime in 2003 when I ran across his web-site. He was proposing a viral theory for autism and we spent a good deal of time trying to develop treatments for my daughter. None of them worked. But on a road filled with so many disappointments, it's also important to take the time to acknowledge the good people you meet on the journey. Despite the failures, David never lost the optimism that one day an answer would be found.
There's a story a fellow science teacher told me that I've always remembered. This science teacher headed the Education Center at Lawrence-Livermore Labs and was present when Edward Teller, father of the hydrogen bomb, came to visit the National Ignition Facility, designed to create nuclear fusion, the energy of the Sun.
"What do you think you will learn?" the elderly scientist asked of the director in his thick Hungarian accent.
The chief scientist prattled on about all of the things they expected to discover on the road to nuclear fusion, but Teller was unimpressed.
The famous scientist shook his head and said, "No! The answer is, you have no idea what you will learn!"
I like the story because it demonstrates a humility in the face of the things we don't understand. It's not just that we know we don't know. It's that we might not even know the right questions to ask.
I was reminded of Teller's story when I read an article, dated July 15, 2011 from Science Daily entitled, "First Adenovirus to Jump Between Monkeys and Humans Confirmed." What? Adenoviruses can jump from monkeys to humans? We never knew that! You can read the article HERE.
Are you getting my point?
My choice for the scariest reading of the year was recently published in the journal Cancer Biology and Therapy and has the unwieldly title of Frequent Detection of Infectious Xenotropic Leukemia Virus (XMLV) in Human Cultures Established from Mouse Xenografts.
For those of you who may be confused by the idea of a "xenograft" I'll provide you with the definition given by the U. S. Public Health Service. "Any procedure that involves the transplantation, implantation, or infusion into a human recipient of either (a) live cells, tissues, or organs from a non-human animal source or (b) human body fluids, cells, tissues or organs that have had ex vivio contact with live non-human animal cells, tissues, or organs." This covers vaccines as well as other surgical procedures in which human tissue is manipulated prior to transplantation.
In the scientific community mouse xenografting is often used to manipulate cancer cells for research purposes, among other things. With research that has linked XMRV (which is a xenotropic murine leukemia virus) to prostate cancer, chronic fatigue syndrome/ME, and to a lesser extent autism, scientists from Johns Hopkins University and the University of Texas Southwestern Medical Center as well as a few other institutions thought it made sense to investigate the frequency of XMLVs in human cell lines "established from mouse xenografts and to search for the evidence of horizontal spread to other cell lines."
In layman's terms the question they were asking was, "when we do xenografting with mouse biological products how often do we get XMLVs popping up in our samples?"
The answer they found is that six out of twenty three (26%) mouse DNA free xenografts "were strongly positive for MLV and their sequences had greater than 99% homology to known MLV strains." These samples were obtained from seven independent laboratories.
Further on the authors wrote, "Of the 78 non-xenograft derived cell lines maintained in the xenograft culture containing facilities, 13 (17%) were positive for MLV, including XMRV, a virus strain first identified in human tissues." (My daughter with autism has tested positive for XMRV.) In scientific terms this is an absolute train wreck.
This means that every surgical patient receiving any biological product which used mouse tissue in any way has a one in four chance of being exposed to an XMLV. And that also means that any biological sample which is maintained in a facility containing xenograft cultures has a 17% chance of becoming infected.
On the question of vaccines, let's just say that only 10% of the nearly 40 vaccines children are expected to receive prior to the age of five contain mouse biological products. This translates into roughly a 100% chance that our current generation of children will be exposed to an XMLV through a vaccination.
Are you scared yet?
It gets worse.
I've been very busy lately.
Unfortunately, I can't talk much about it. What I can say is that on some level, my prayers to God for an understanding of the autism epidemic have been answered. I now know why they fear us so much. I can't prove it, and as a lawyer I understand that's the real show. But I know.
And yet, as thankful as I am for an understanding of what has happened to my child and so many others, my heart is heavy. The Dark Forces which in the past have destroyed the careers of those who have found clues to the afflictions of our children and other disease communities are once again on the move. You may very well read about their actions this week. And I can't do anything to stop them.
I recently watched the mini-series The Stand, based on the book of the same name by Stephen King. The book has long been one of my favorites. It starts like a science fiction movie, with a deadly virus escaping from a government lab, and killing most of humanity. But then it changes. The survivors start having dreams. Some dream of Mother Abigail, a 106 year-old black woman who lives in Hemmingford Home, Nebraska. Mother Abigail urges those who dream of her to meet in Boulder. Colorado. Others dream of Randall Flagg, who tells them to meet him in Las Vegas, Nevada.
As the inevitable showdown between the good people of Boulder and the evil people of Las Vegas looms, something quite remarkable takes place. Instead of a great battle between the two sides, Mother Abigail has a vision that five members of the Boulder community must make their way to Las Vegas where they will make their "Stand" against Randall Flagg. They will deliver themselves into the hands of the enemy.
Flagg is clearly a demonic force, but he doesn't have quite the hold over people he thinks he does. His followers keep deserting him, especially in light of the five who have chosen to make their "Stand" against him. They carry no weapons. It's simply the power of the faith they bring to that unholy place which defeats Flagg. Evil falls apart in the face of such humble courage.
It's a nightmare many autism parents fear. Not only do you live with the daily challenge of a child with autism, but you wonder what might happen if the government wanted to take your child away. Would they care for your child as you would?
By all accounts, Derek Hoare is a wonderful father to his two children with autism and a normally developing son. He is a single father on government assistance in British Columbia. His ex-wife has written "He has been a loving and dedicated father. He has had . . . an enormous amount of challenges as a parent, the likes of which most people would not believe." An article on this case can be found HERE.
The most recent challenge he's had to face started when he momentarily took his eyes of his nine-year-old daughter, Ayn. Even though his house is surrounded by a six-foot fence, she disappeared. He ran up and down the street looking for her. After ten minutes he called the police. Three hours later she was found safe and sound playing in a neighbor's pool. Although Derek locks the doors and windows in his house, he believes his daughter escaped by climbing her treehouse and jumping over the fence.
When Ayn was brought back to her father she ran into his arms.
Four days later, though, officials from the Ministry of Children and Family Development came with orders to take Ayn away. The officials told Derek they were taking this action to "lighten his load." Due to her need for round-the-clock attention she will be placed in a psychiatric facility. Derek worries that the staff will hold her down and sedate her in order to make her more compliant.
Derek now has to wait for a July 12 hearing to determine his level of access to his daughter. He worries about even going to visit her, knowing she'll cry and beg to be taken home.
If you have any suggestions or comments for how the Ministry of Children and Family Development can "lighten the load" of this parent, by much less drastic measures, such as a tracking device for his daughter, or respite care, please feel free to contact them at (604) 870-5880 and share your thoughts.
Kent Heckenlivey is a Contributing Editor to Age of Autism
I received the following e-mail a few weeks back from the National Institute of Health concerning my inquiry into XMRV (xenotropic murine leukemia virus related virus) infection and children with autism. Here is the reply:
Dear Mr. Heckenlively:
Thank you for writing to the National Institutes of Health (NIH) concerning the presence of the XMRV retrovirus in children with autism. As the Acting Director, Office of Science Policy, Planning, and Communications, National Institute of Mental Health (NIMH), I have been asked to respond on behalf of Dr. Francis Collins, NIH Director.
NIH is dedicated to addressing the growing public health challenge that autism spectrum disorders (ASD) present. In FY 2010, NIH invested $160 million from its annual appropriation in research on autism and another $58 million in funding provided through the American Recovery and Reinvestment Act. In addition, NIH issued several funding opportunity announcements to encourage research designed to elucidate the etiology, epidemiology, diagnosis, treatment, and optimal means of service delivery related to ASD.
As you may be aware, NIH intramural researchers are examining the XMRV retrovirus in samples from approximately 100 children in an autism subtyping study: Neuroimmunologic Investigations of Autism Spectrum Disorders. You can access further information on the study via the NIH Research Portfolio Online Reporting Tools at http://projectreporter.nih.gov/reporter.cfm. Since final analyses of the study are not complete and have not been published, we do not yet have any results to provide. The researchers will share the results in the future after completion of the data analysis.
Thank you again for your interest in research on autism.
Marina Volkov, Ph.D. Acting Director NIMH Office of Science Policy, Planning, and Communications
I responded on June 2, 2011, asking three questions, based on a series of e-mails provided to me by another autism parent who had made a similar inquiry.
1. What was the testing initially used by the NIH which showed a high rate of XMRV infection in children with autism?
2. What were the subsequent tests used by the CDC which did not show a high rate of XMRV infection in children with autism?
3. Is the NIH following the established protocols for blood storage, preparation of the sample, and tests utilized, as detailed by the initial study group of the Whittemore-Peterson Institute, the Cleveland Clinic, and the National Cancer Institute as detailed in their October 2009 article in the journal Science?
When I receive an answer to these questions I will share them with the readers of Age of Autism.
Kent Heckenlively is Contributing Editor to Age of Autism
My daughter's one-on-one aide spent last weekend in jail.
You see, in addition to being one of the best things in my daughter's life, her aide is a passionate advocate for animal rights. She protests at the circus, rescues turkeys (I'm not kidding) and other animals, and was even one of the leaders in a recent successful California ballot initiative on behalf of more humane conditions for farm animals. Apparently, one of these protests got a little out of hand and that's how she ended up in a jail cell.
It got me thinking that if we ever want to change the discussion about vaccines and autism, that we need to get loud. The current medical system is destroying a generation of children. A recent report found that 54% of children suffer from a chronic health problem, and that 1 in 6 has a developmental disorder.
And we worry about sounding crazy.
We're supposed to genuflect at the altar of vaccines, then speak in a reasonable tone of voice, and ask for them to please look into the safety of their products. But they never do.
They call us "warriors."
I'm speaking about the chronic fatigue syndrome/ME community and the way they view the autism parents. When I hear them speak this way I'm proud to belong to our group.
For those who are most severely affected by chronic fatigue syndrome/ME, often needing to lay in bed for most of the day with the curtains drawn, they refer to themselves as "the unburied dead."
My desire to assist this community is borne of simple human compassion, but also by the prospect that in their suffering they hold clues to what is going on with our own children.
Generation Rescue, Talk About Curing Autism, and the National Autism Association are all asking their members to support this effort to aid the Whittemore-Peterson Institute for Neuro-Immune Disorders in the Chase Community Giving Program.
Voting ends at midnight, EST, May 25, 2011. This is the last day to vote.
I know how strongly at least two of the autism groups feel because I set up the meeting with Dr. Judy Mikovits to go over her research into the XMRV retrovirus, chronic fatigue syndrome/ME, and yes, autism. The discussion lasted more than three and a half hours. Many questions were asked, but the feeling in the room was almost electric. We might be on the trail of an answer which explains what happened to our children, and also why so many mothers seem to have a myriad of health concerns. A retrovirus can explain many (if not all) observations reagrding autism, from co-infection by other pathogens, oxidative stress, mitochondrial problems, vaccines acting as a catalyst for the virus to replicate out of control, and mysterious ailments of the autism mothers.
Dr. Amy Yasko, whom I consider to be one of the brightest minds in autism, is excited about this research because it dovetails with many of her long-term observations and suspicions. The same can be said of Dr. Jeff Bradstreet.
It's time for the legions of the chronically ill, such as the autism, chronic fatigue syndrome/ME, Gulf War illness patients, and the hundreds of thousands of children with potentially life-threatenting allergies and their parents to band together in a single forum to raise our voices. Let this be a small step in that direction.
I know everybody is tired. I know there are so many battles to be fought, most concerning how to just get through the day with our sick children. My own daughter just came home a few days ago after spending nine days in the hospital with uncontrolled seizures. But for one last time I ask you to elevate your gaze and take a few moments to vote for the Whittemore-Peterson Institute for Neuro-Immune Disorders.
Here's how to do it:
1. From your Facebook page, go to Chase Community Giving:
By Kent Heckenlively, Esq.
Generation Rescue, Talk About Curing Autism, and the National Autism Association are teaming up to ask their members to vote for the Whittemore-Peterson Institutue for Neuro-Immune Diseases/University of Nevada-Reno in the Chase Community Giving Project, which ends on May 25.
In the first round, the Whittemore-Peterson Institute finished fifth in overall voting. This won them $25,000. The difference between fifth and first place was three thousand votes. In the second round the first place winner will receive $500,000.
Readers of this website know I've written many times about the work of the Whittemore-Peterson Institute and their work with XMRV retrovirus and autism. It's no secret I consider this to be one of the more promising areas of inquiry. Chronic fatigue syndrome/ME and autism share a number of immune system abnormalities.
However, the fact that Generation Rescue, Talk About Curing Autism, and the National Autism Association have agreed to help with this effort shows that this opinion is not held by me alone. I was also heartened to receive an e-mail the other day from Dr. Amy Yasko, letting me know she was also going to vote for the Whittemore-Peterson Institutue.
Let me tell you why I think that this vote is good for our community. We have long needed a world class facility dedicated to studying the problems of our children, staffed by scientists who are not afraid to ask challenging questions. I believe that describes the Whittemore-Peterson Institutue and the people who work in it. For those who believe this to be a worthwhile cause I strongly encourage people to get friends and relatives to vote as well. I have set a personal goal of gathering 100 votes from family and friends. I am currently at 10% of my goal.
After you vote for the Whittemore-Peterson Institute you will have four other votes to share among other charities you desire. Here is how you can vote.
1. From your Facebook page, go to Chase Giving Community:
2. "Like" the Chase Giving Community by clicking on the "Like" button.
3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.
4. Cast your vote by clicking the "Vote Now!" button.
5. Search other organizations for whom you want to vote, up to 5 per Facebook account.
Voting for round two is May 19 – May 25
Kent Heckenlively is a Contributing Editor to Age of Autism
I received an interesting series of e-mail exchanges from the mother of a seven-year-old boy with autism and officials from the Centers for Disease Control. The e-mails concerned her request for information from the CDC about testing for the presence of the XMRV retrovirus in children with autism. The mother also suffers from chronic fatigue syndrome/ME.
The e-mail exchange was prompted by the publication of an article by David Kirby in The Huffington Post in December of 2009 in which Dr. Thomas Insel, Director of the National Institute of Mental Health mentioned that his intramural group at the NIH had been looking into the presence of the XMRV retrovirus in children with autism since August of 2009. HERE
The series of e-mail exchanges which took place in November of 2010 are interesting for what is said, and what is not. Dr. Insel provided a note from Dr. Swedo in respone to the inquiry from this mother.
Dr. Mike Iadorola is now ready to run the XMRV assays on samples from our children with autism (approx 100), typical development (60) and developmental delay (30). We did send him a batch of approximately 100 samples last summer (from the three groups), almost immediately after the initial report of the positive results in autism. However, that assay proved to be quite unreliable, yielding positive results in individuals who were known to be negative by more extensive testing.
The mother was confused by the response so sent back the following inquiry.
I am puzzled by the statement "yielding positive results in individuals who were known to be negative by more extensive testing" - as the testing for XMRV in humans is still not standardized, how can one test be considered "more extensive" than another one? What tests were used to give the original positive results? Were the samples taken and handled in the same way for these tests that gave the negative results? How were those initial positive results explained away - contamination? Cross-reactivity?
I would appreciate if you could share with me what assays were used for negative/retest findings and who developed them?
In response Dr. Mike Iadorola sent back a reply noting that the assay used was called luciferas immunoprecepitation systems and suggested she look at the results from a recent publication in the journal Molecular Autism by Satterfield/Cooperative Diagnostics.
For many long years I've felt that those of us in the autism community resemble the African-Americans in the 1930s and 1940s who would go to movies filled with white faces and yearn for the moment when one of their own would appear on the screen for even just a fleeting moment. By and large these actors would do nothing more than utter a sarcastic quip or provide some important piece of information, or simply take somebody's coat. It would matter because for a brief moment the members of that community would feel they too were part of the American nation.
I couldn't help but feel a bit of solidarity with those audiences as I sat on the sidelines and heard President Obama says this on April 13, 2011 in regards to the Ryan plan.
It's a vision that says up to 50 million Americans have to lose their health insurance in order for us to reduce the deficit. Who are these 50 million Americans? Many are somebody's grandparents, maybe one of yours, who wouldn't be able to afford nursing home care without Medicaid. Many are poor children. Some are middle-class families who have children with autism or Down's syndrome. Some are kids with disabilities . . . so severe they require 24-hour care. These are the Americans we'd be telling to fend for themselves.
And yet it all sounds so hollow.
Does anybody believe this means President Obama is going to do a single helpful thing for this disease which is striking more than 1 in 100 children and is now twenty times more prevalent than polio ever was in the population?
Now I'm not writing this to tell you who to vote for, but to simply point out how useless politicians seem to be about anything in regards to autism. Remember that kid with autism who scored so many basketball shots in a row and President Bush stopped by to see him? Nice gesture, but who the hell cares?
Maybe I'm just a little punchy because in the past month I've spent two nights in the hospital with my daughter who was having breakthrough seizures, then she got a yeast flare which caused her to be up for several nights in a row walking around the house, or that the new seizure medication seems to be giving her incredible rages.
By Kent Heckenlively, Esq.
Although I’ve been a science teacher for the past five years I find that when I’m confronted with new information I want to explain to people I fall back on the strategies I used during the fifteen years I was a lawyer. I hope you'll consider this article in that light, as essentially an opening statement.
I think it’s important to note I don’t refer to this as a closing argument. I consider this to be the beginning of a discussion, not the end.
In a typical opening statement a lawyer reviews the evidence, the theories which will be presented, but doesn’t go into exceptional detail to prove every single point. That’s what the trial is for. And so, while each one of the points I want to make could be abundantly expanded upon, my intention is to present a brief overview of the major issues regarding the potential importance of the XMRV retrovirus to autism.
As a reader I think you'll be impressed by the number of observations which can be explained as a consequence of XMRV infection. Similarly, disturbing questions are raised about the role of vaccines in the spread of this retrovirus. When our understanding of how XMRV disregulates the immune system is as complete as our understanding of how various toxins can cause similar disruptions we may be able to better help those children for whom recovery remains a distant mirage.
XMRV background - XMRV (xenotropic murine leukemia virus-related virus) was discovered in 2006 by scientists working at UCSF and the Cleveland Clinic in the tumors of men with aggressive prostate cancer. It's important to understand the difference between a typical virus and a retrovirus like XMRV. A typical virus enters a cell, hijacks the cellular machinery to make viral particles, then causes the cell to burst, spreading viral particles throughout the body. A retrovirus enters a cell and inserts itself into the DNA of the host, often remaining dormant for years. I've mentioned it before, but my daughter with autism/seizures, my wife with psoriasis, and my mother-in-law with celiac sprue have all tested positive for XMRV. I have tested negative.
In 2009 XMRV was linked with chronic fatigue syndrome/ME. An abstract presented at a meeting in 2010 from a small group of children with autism found that 82% of the children tested positive for the XMRV retrovirus.
The scientists working on this research believe XMRV is stimulated by three things, and this is where it starts to become relevant to the autism community.
I recently finished reading the book Unbroken by Laura Hillenbrand and couldn't help thinking how relevant its message is to so many communities.
For those unfamilar with the book, it tells the story of Louis Zamperini, one of the world's great runners in the years before the Second World War, his experiences as a Japanese POW, and what happened upon his return to the United States. The author, Laura Hillenbrand suffers from chronic fatigue syndrome/ME. I know, sounds sad and disturbing, right? I agree. And yet it's one of the most profound and uplifting stories I've read in years.
I've been spending a good deal of time recently on chronic fatigue syndrome/ME websites. I don't know if you're aware of this, but lately they've been striking some pretty good blows for the autism community. There has been preliminary data linking both autism and chronic fatigue syndrome/ME to the XMRV retrovirus and it has some of the traditional opponents of the autism community concerned. I've mentioned it before, but both my daughter with autism and my wife have tested positive for the XMRV retrovirus.
The other day there was a web-chat with Chicago Tribune reporter Trine Tsouderous and Dr. Paul Offit regarding vaccine safety. Dr. Jamie Deckoff-Jones, a chronic fatigue patient asked the following question of Trine and Dr. Offit.
Dr. Deckoff-Jones: Are you concerned that the current epidemics of ME/CFS, ASD (autism spectrum disorders) and GWI (Gulf War illness) are related to vaccines? These neuroimmune disease cohorts are all of mysterious etiology and share many clinical similarities: sensory and cognitive processing deficits, susceptibility to and inability to clear certain infections, an unusual susceptibility to stress, increased oxidative stress, glutathione depletion, methylation blocks, mitochondrial defects, high levels of heavy metals, inflammatory bowel issues, hormone abnormalities and a suspicion that vaccines are implicated in pathogenesis. The pathology in humans is extremely similar to what is known of simple retroviral infections in animals. We have evidence that xenotropic and polytropic MuLVs are infecting humans (Lombardi et al Science Oct 2009, Lo et al PNAS Sept 2010). Given the history of the use of mouse and chick embryo cells for vaccine production coinciding with the history of Epidemic Neuromyasthenia (as documented by Henderson and Shelokov, NEJM 1959), the known presence of animal retroviruses in those cells, and the documented ability of these viruses to infect human cells, aren't you the least bit concerned?
It's been said that some of the greatest tragedies happen because those in charge fail to ask the most basic questions.
Consider the fire which swept the Apollo 1 capsule in 1967, killing all three astronauts. A spark ignited the pure oxygen atmosphere in the spacecraft. Every high school chemistry student learns pure oxygen is highly flammable. After an exhaustive investigation the conclusion was that no engineer had asked the simple question of whether it was safe to have a pure oxygen environment in the capsule.
I was reminded of the Apollo disaster when I read a recent post by Dr. Jamie Deckoff-Jones entitled Cover-up and Contamination Theories. HERE Dr. Deckoff-Jones is a former emergency room doctor, chronic fatigue syndrome/ME patient, and is currently the clinical director of the Whittemore-Peterson Institute of the University of Nevada/Reno. However, the blog explicitly states the opinions expressed are hers alone and do not necessarily represent those of the Whittemore-Peterson Institute.
The simple question Dr. Deckoff-Jones asks in her post is whether the culturing of viruses for vaccines in certain animal tissues, such as mice, has resulted in the combination of endogenous human and mouse retroviruses and caused both the chronic fatigue syndrome/ME and autism epidemics.
Dr. Deckoff-Jones begins by asking how those who claim XMRV (xenotropic murine leukemia virus-related virus) is a lab contaminant explain that the blood of chronic fatigue syndrome/ME patients contain antibodies to XMRV. Anti-bodies can only be produced in the body, thus any later contamination of the blood in a lab would not provoke an immune response. The Whittemore-Peterson Institute has also put out a statement on allegations of contamination. HERE
I've been interested in XMRV since my daughter and wife have both tested positive for the retrovirus and are part of an ongoing research program at the Whittemore-Peterson Institute. I have tested negative for the retrovirus. Children with autism share many common clinical symptoms with the chronic fatigue syndrome/ME population, including immune disregulation, increased oxidative stress, expression of proinflammatory cytokines, low natural killer cell functionality, and active microbial infections.
A new study from scientists at Emory University, the Cleveland Clinic, Yerkes National Primate Research Center, and Abbott Diagnositics and featuring such medical luminaries as Drs. Eric Klein and Robert Silverman is providing information on the path of XMRV infection in primates, and surprisingly the possible triggers for activation of the retrovirus. The work was recently published in the Journal of Virology.
I have a long-standing interest in XMRV (xenotropic murine leukemia-related virus) as my daughter with autism/seizures and my wife have both tested positive for the retrovirus. (My daughter has also recently tested positive for co-infection by HHV-6, type B.) I have tested negative for XMRV. While most of the recent commentary on XMRV has focused on its possible connection to chronic fatigue syndrome/ME, children with autism share many common clinical symptoms with the CFS/ME population, including immune disregulation, increased oxidative stress, expression of proinflammatory cytokines, low natural killer cell functionality, and active microbial infections.
A poster presentation entitled "Detection of Infectious XMRV in Peripheral Blood of Children" was made at the 1st International Workshop on XMRV in September of 2010 at the National Institute of Health in Bethesda, Maryland. In a small sample it was found that 14 of 17 children (82%) of the children were positive for XMRV infection.
I will confess my deep disappointment over the outcome in Bruesewitz v. Wyeth. The case was well-presented by the attorneys and I thought it might be one of those rare instances where there could be a convergence of conservative suspicion of big government and a liberal suspicion of big business.
I was wrong. The conservatives did not hold true to their principles. The liberals did.
And yet in the 6-2 decision I must also note a crack in the defenses. You'll forgive me if I sound a little like Atticus Finch in To Kill a Mockingbird, who noted hope in a small-town southern jury who argued long and hard before convicting an obviously innocent black man of attempted rape.
To put it bluntly, the republican males of the court folded and the democratic women, Sotomayor and Ginsburg stood firm and identified the true issues in the case. Sotomayor's blistering dissent set the stage for future public debates. Here is the preview she gave of her 28 page dissent:
"Vaccine manufacturers have long been subject to a legal duty, rooted in basic principles of products liability law, to improve the design of their vaccines in light of advances in science and technology. Until today, that duty was enforceable through a traditional state-law tort action for defective design. In holding that section 22(b)(1) of the National Childhood Vaccine Injury Act of 1986 (Vaccine Act or Act), 42 U.S.C. section 300aa-22(b)(1), preempts all design defect claims for injuries stemming from vaccines covered under the Act, the Court imposes its own bare policy preference over the considered judgment of Congress. In doing so, the Court excises 13 words from the statutory text, misconstrues the Act's legislative history, and disturbs the careful balance Congress struck between compensating vaccine-injured children and stabilizing the childhood vaccine market. Its decision leaves a regulatory vacum in which no one ensures that vaccine manufacturers adequately take account of scientific and technological advancements when designing or distributing their products. Because nothing in the text, structure, or legislative history of the Vaccine Act remotely suggests that Congress intended such a result, (bold is mine) I dissent."
This dissent sets the stage for all future conversations.
The masterful new book, Vaccine Epidemic, edited by Louise Kuo Habakus, M.A., director of the Center for Personal Rights, and Mary Holland, J.D., research scholar at the New York University School of Law may be the most important book yet published on the autism-vaccine controversy.
I say this as an attorney because of my conviction that the scientific misdeeds alleged by many in our community, and in which I strongly believe, could never have taken place without a legal framework which allowed them to happen, and subsequently, prevented them from being investigated. To put it simply the whole game is rigged. Do you play an unfair game or do you walk away?
Consider the public debate on this issue. Our community is referred to as "anti-science" because we assert that vaccines cause significant damage in some people. The 1986 National Childhood Vaccine Injury Act itself defines vaccines as "unavoidably unsafe." Even though I believe the court established by this Act to be fundamentally flawed in many ways, and should be abolished, the fact remains it has paid out more than $2 billion dollars since 1988. How are we "anti-science"? It seems to me we should be referred to as "pro-science" since we are asking the medical community to come up with some sort of screening system to identify those at risk for vaccine injury.
I've been glued to the television the last couple days watching the situation in Egypt unfold and thinking of our community. Make no doubt about it, we are an opposition group. If there is any radicalism within us it's because our questions to the reigning medical establishment have been so consistently ignored, and we as a community have been attacked. What have we asked of the medical community which threatens them so greatly? A study on the rates of neurological disorders among vaccinated and unvaccinated children? If that would take too long, how about a similar study with a group of vaccinated and unvaccinated primates?
Some, like Dr. Andrew Wakefield, are attacked and an attempt is made to destroy their professional reputations. (Or if you are too highly respected, like former head of the National Institute of Health, Dr. Bernadine Healy, who has publicly stated that this issue has not been honestly investigated for fear of what might be found, you are ignored in any media stories.) Let me be clear about this. Dr. Wakefield is only the most visible medical person to be attacked. In my discussions over the years with various scientific researchers they have often shared similar stories with me. I expect any medical professional who honestly searches for the cause of autism to run the risk of an attack on his or her professional reputation.
And what in this orgy of ignorance that the medical community seems to have about the most common childhood developmental problem, have brave researchers discovered about our children?
"Hey, what do you think about all the news on Wakefield?" my brother asked over the phone.
He had called me. This was a rare occurence. Usually I call him. He's my older brother, just a little more than two years older, although in school we were separated by three grades. He was one of those December babies, ready to take on the world, and so he ventured into school younger than most of his peers.
My brother had asked my parents for a baby brother and they obliged him, so I wasn't perceived as a rival to our parent's affections. In addition, my parents had the foresight to buy gifts from "the baby" every time my mom went for a doctor's appointment, and when I came home from the hospital there was a new tricycle waiting for him. He had asked for me, and in an unexpected bonus, I came with presents.
While we were close it was also clear we had wildly different personalities. He was a fighter, a scrapper, an athlete, and well, I was none of these things. We had a joke that when the coaches saw me coming they'd rub their hands in expectation saying, "Great! Another Heckenlively! And then they'd meet me." Because let's face it, my brother was a stud. He won hundreds of first place ribbons in swimming, was a pitcher for his little league team, and captain of his high school footbal team. And as for me, in swimming I beat exactly one person in two years of swimming, held the strike-out record in tee-ball, and although I played a year of high school football, nobody was clamoring for me to become captain. I disappointed many a coach.
Do you ever find yourself wondering when the media will look at vaccines with the same skepticism as it does other medications?
After watching Anderson Cooper of CNN go after Dr. Andrew Wakefield with more anger than if he'd been questioning a dictator who'd killed millions, I'm not really holding my breath for the media to do their job.
I'm a little more hopeful for the Supreme Court. In a January 13, 2011 editorial for The New York Times entitled "The Anosmia Case" HERE the Times told of a very interesting case before the Supreme Court in which the justices displayed an admirable amount of intellectual curiousity and just plain common sense.
It's one of those cases in which you get to the end and ask yourself, are the lawyers really making that argument? Here are the facts.
Zicam, a homeopathic cold remedy was marketed by a company called Matrixx Initiatives. The company received complaints from 23 users of the product claiming they'd lost their sense of smell, a condition known as anosmia. "Good Morning America" aired a piece questioning the safety of Zicam and as a result the price of Matrixx's stock fell 24 percent. The shareholders sued, saying the company should have warned investors about the problems and potential lawsuits.
According to The New York Times, "The company complained that it didn't have to, arguing that the complaints had no scientific basis, that any loss of smell should be blamed on illness and that the number of complaints was not statistically significant." Sounds similar to how the pharmaceutical companies respond to complaints regarding vaccine injury, doesn't it? If it's not "proven" we don't have to tell you the company claimed.
There was an interesting juxtaposition on the Fox news website the other day.
On one side was an article about the BMJ's report claiming that "Study Linking Vaccine to Autism was 'Elaborate Fraud' Journal Says" HERE while right next to it was an article which read, "Study Finds Link Between Autism and Air Pollution." HERE
Sometimes when you're an attorney and presenting a case you engage in an exercise in which you assume that the other side's assertions are true. What then? Let me be clear about my own opinions. I've read Dr. Wakefield's articles, his book, listened to him lecture, and have even sat across the table from him to have a conversation. I believe Wakefield is innocent of any wrongdoing and that he has identified an important piece of the autism puzzle, namely, that something has gone so wrong in the immune system of many children with autism that a weakened measles virus from a vaccine can persist for years in their gastrointestinal systems.
But just for the sake of argument let's say I didn't believe that.
Instead I'll go to that second, supposedly non-controversial article, "Study Finds Link Between Autism, Air Pollution." From the first paragraph of the article it states, "Researchers have found that children who live near freeways at birth (within 1,000 feet) have twice the risk of autism, suggesting that environmental factors may play a role in the disorder's growing incidence." The study was undertaken by researchers from the Saban Research Institute of Children's Hospital of Los Angeles.
Further on we're told that "The study, published in the journal Environmental Health Perspectives, looked at 304 children with autism and 259 normally developing children," and that, "A 2006 study also found autistic children were 50 percent more likely to have been born around contaminated air."
Managing Editor's Note: We honored Sheila Medlam earlier this week (HERE) for her unfathomable strength following her young son Mason's death by wandering and drowning this past summer. She created a Foundation in his name to protect others. That's the meaning of strength, love and mettle. It moves our community forward and teems with positive energy. It shines in stark contrast to the negative factions who fight and write for base and self-serving reasons. Sheila sent this thank you, and we decided to highlight and share it with each of you, our fellow travelers on this journey. Happy New Year, friends. KIM
Thank you so much for recognizing our voices and our passion. It is wonderful to know that Mason lives on through such wonderful people who not only love my son, mourn his loss, but understand how quickly our lives were changed. Over the past few months there have been a few, very few thankfully, that have said, "How could this happen? This family is responsible. This family is negligent." Those few can never understand the pain and sorrow that we live with every second of every day, but all of you do. You have never asked those questions because you see your children in my son's beautiful face and you understand how our world was destroyed in the blink of an eye. It is very easy to share Mason with all of you. I can not bear to let him go. I can not bear to let the world forget him or let his memories fade. He lives on in all of you and I am forever in your debt. Thank you for allowing us to become a part of all of your families. Thank you for remembering Mason and keeping him alive in all of your hearts. You will never know what you have all done for my family. You saved us. You gave us the strength to live when we didn't know how we would be able to. Thank you all so much. It doesn't seem like those words are even adequate for all you have given, but they are all I can offer. We love you all so much. Sheila Medlam and family
Why bother to call attention to Dr. Paul Offit, the vaccine patent-holder who has led the attack on the idea that vaccines have anything to do with autism or any of the myriad of other ailments afflicting this generation of American children? Well, because other people are paying attention -- including the nation's pediatricians and the mainstream journalists who need to start calling him to account. Offit has a new book out -- "Deadly Choices: How the Anti-Vaccine Movement Threatens Us All." Here's the question doctors who recommend him to nervous parents, and parents unsure what to think, and journalists who interview him, need to ask: Why is Offit transparently opposed to ever studying the health outcomes of vaccinated versus unvaccinated Americans, even as he acknowledges that vaccines have a long history of causing serious side effects?
While his last book, "Autism's False Prophets," focused squarely on the disability now afflicting 1 in 100 children, Offit branches out here to deride those who have any concerns whatsoever about the safety of the current vaccine schedule. There is plenty of sympathy for parents of children who have died of infectious diseases, but perfunctory dismissal in cases where parents blame vaccines.
Thus Michael Belkin, whose daughter Lyla died after her hepatitis B shot, is treated as a gullible gadfly, goaded by Barbara Loe Fisher into heading "the Hepatitis B Vaccine Project at her National Vaccine information Center. Soon Belkin, a Wall Street financial adviser, was everywhere" -- everywhere being the CDC and Congress, which is exactly where he should have been as a citizen and parent who believes that Hep B is a dangerous and unnecessary childhood vaccine that killed his daughter. Sniffs Offit: "Despite Belkin's certainty that hepatitis B vaccine had caused his daughter's SIDS, study after study failed to support him."
Parents of girls who died after Gardasil vaccination get similar treatment. The idea that Gardasil is dangerous is "a contention refuted by careful study" and "established science."
And chickenpox vaccines are critically important because chickenpox can lead to shingles, "one of medicine's most debilitating diseases. Shingles is so painful that it has at times led to suicide. And shingles doesn't only affect the skin; sometimes when the virus reawakens it causes strokes, resulting in permanent paralysis. Chickenpox is a disease worth preventing." Absent is any acknowledgement of the evidence that the vaccine itself, by reducing cases of simple childhood chickenpox, has led to a big increase in shingles by removing the protective immunological "bump" those who already harbor the virus receive when they are re-exposed.
Hannah Poling and the government's $20 million concession that vaccines resulted in her autistic regression? Not mentioned. Billions paid out by vaccine court for all sorts of injuries over the past 20 years? Well, vaccine court is a strange place ...
Anyone concerned about any of these things fits Offit's definition of anti-vaccine, because vaccines don't cause any of them, because Paul Offit says so, a solipsism that is really quite breathtaking: "[B]ecause anti-vaccine activists today define safe as free from side effects such as autism, learning disabilities, attention deficit disorder, multiple sclerosis, diabetes, strokes, heart attacks, and blood clots -- conditions that aren't caused by vaccines -- safer vaccines, using their definition, can never be made."
Yet Offit himself yields an amazing amount of ground by describing unsafe vaccines -- including early polio shots and a rotavirus vaccine that was the immediate predecessor of his own. His technique is to situate all this as historical, part of the triumphant march of progress into the bright sunshine of vaccine safety. Here's a description I find especially astonishing: "When Barbara Loe Fisher burst onto the scene, several vaccines had serious side effects, every year causing allergic reactions, paralysis, or death. Public health officials and doctors didn't hide these problems. But they didn't do anything to correct them, either. And most parents had no idea they existed."
Public health officials did nothing to fix vaccine problems that led to paralysis and death? And parents didn't know about it? Is this not an indictment of the medical industry, and an unintentional endorsement advocates who have worked to remedy it? Does it not argue that at least some of the time parental observations may well be correct, an early warning system of the first order? Well, no, because apparently those things no longer happen -- to say otherwise, in Offit's parallel universe, would be anti-vaccine conspiratorial quackery.
Much of the book is a score-settling screed against anyone who's ever criticized him or vaccine safety surveillance, including Fisher, Jenny McCarthy and J.B. Handley. So it's no surprise that his "can't be done" argument against studying unvaccinated populations for any untoward outcomes arrives in the middle of an attack on Handley. Offit quotes J.B.'s comments on a Larry King segment in April 2009: "Larry, we have no idea what the combination risk of our vaccine schedule looks like. At the two-month visit, a child gets six vaccines in under fifteen minutes. The only way to test that properly would be to have a group of kids who get all six and a group of kids who got none and see what happens. They don't do that testing. They have no idea."
Offit's comment: "Handley was asking for a study of vaccinated and unvaccinated children. One result is certain: given recent outbreaks of Hib, measles, mumps, and pertussis, no vaccinated children would suffer and possibly die from preventable infections. It would be, of course, an entirely unethical experiment. No investigator could prospectively study children who are denied a potentially lifesaving medical product. And no university's or hospital's institutional review board worth its salt would ever approve such a study."
Offit goes on, outrageously, to compare Handley's proposal to the infamous Tuskegee experiment in which doctors withheld treatment from black males suffering from syphilis in order to study the natural course of the disease.
P-LEEZE. No one I know of is suggesting that a study of unvaccinated children deliberately withhold vaccination. Rather, there are growing numbers of never-vaccinated children in America -- a fact Offit acknowledges with dismay -- and plenty of families willing to participate in such a study. State governments have vaccine waivers on file for public school attendance that are another obvious source of non-life-threatening data.
The real problem for Offit is not an ethical one; the real problem is that any such study would trump all the self-interested industry and CDC studies that never manage to include never-vaccinated chldren as a control group. Informal efforts to do that -- by myself, J.B.'s Generation Rescue and others -- have pointed toward less autism and asthma, and been met by the medical establishment and its sycophantic sock puppets with an absolute frenzy of denial and misdirection.
In our book, "The Age of Autism -- Mercury, Medicine, and a Man-made Epidemic," Mark Blaxill and I discuss this aversion to doing the obvious. "A very simple test goes right to the heart of the vaccine controversy: What is the difference in total health outcomes, including autism, between vaccinated and unvaccinated populations? We would argue that we've uncovered a number of natural experiments in human populations that suggest we should be seriously concerned over the ever-increasing load of childhood vaccinations, especially in the United States. ... Oddly, when it comes to doing such studies in human populations, and studying the autism levels in the Amish, the homeschooled, or philosophical objectors, vaccine industry proponents resist mightily. Conducting human vax/unvax studies in existing unvaccinated groups would be so fraught with methodological problems that they are 'retrospectively impossible.' As for controlled studies, they would be so burdened with permission problems that they would be 'prospectively unethical.' In short, the resistance to the proposal to do vax/unvax work has not only taken the attitude that 'we already know the answers,' but 'we should not seek to know.' It's pretty hard to make scientific progress in the face of this kind of epistemological nihilism."
I am begging, on bended knee, that pediatricians quit putting Offit on a pedestal, and that mainstream journalists do their job and ask him why he is so averse to any study that involves the health of never-vaccinated children. Don't let him call you "anti-vaccine," and don't let him change the subject to the quite thoroughly separate issue of preventing deadly disease. That's an important topic, but there is room at the table for both effective public health policies against disease AND a fearless examination of whether today's vaccine schedule contributes to chronic health problems -- whether Paul Offit denies it or not.
Dan Olmsted is Editor of Age of Autism
There's an old Latin maxim which states, fiat justitia ruat caelum, which translates roughly as, "May justice be done though the heavens fall."
It's a testament to the eternal nature of humanity that the things which endure are not the trappings of wealth, fame, and celebrity but simple truth. We want to know what people did when confronted with great issues. Did they act with courage or cowardice? It's the standard by which we judge them.
In my role as a writer for Age of Autism I've tried to find the truth. Some truths have made themselves clearly known to me through my own experiences as well as those of others in this community and my own research. Simply stated, I know vaccines were responsible for the decline of my daughter into autism and the near-miss of autism for my son.
The truth which eludes me is how exactly the vaccines are causing autism. The array of possibilities are truly mind-boggling. Consider how many theories you've heard. The mercury, the alumminum, the live viruses, the supposedly dead viruses, unknown animals viruses in the vaccines, unknown human viruses, bacteria, parasites, a misguided immune system response, or other chemicals which we haven't yet focused on.
And this truth is important to me for a simple reason. My daughter is still severely affected. I have no issue with those who advocate that they way to avoid problems like autism is to go to a significantly reduced vaccination schedule, or even forego vaccinations until such time as the answers to these questions become clear. That will work for the next generation of children. The problem is it still leaves me with a severely affected daughter. I want to make sure her future is as bright as that of any other child.
It's probably a requirement to read Age of Autism that you don't mind ruffling a few feathers.
But when we say a major effort should be made to "cure" autism, an affliction which at a conservatively estimated rate of 1 in 100 children is an epidemic on a scale which dwarfs polio which at its height afflicted anywhere between 1 in 1,500 - 2,000 children, (the majority of whom recovered), we're told science doesn't move that quickly.
It was with some amusement I read a recent profile of James Watson, the co-discoverer of the double-helix structure of DNA, Nobel Prize winner, and former head of the Human Genome Project in The Wall Street Journal, HERE in which he said cancer could be cured in his lifetime. He's 82 years old. He also seems to enjoy ruffling feathers. I'm a great fan of such ambition.
I'm well aware that Watson has his detractors, from his failing to give credit to the work of Rosalind Franklin to some of his more off-color comments of recent years, but how can you not have a little soft spot in your heart for a researcher who titled his 2007 book, "Avoid Boring People: Lessons Learned from a Life in Science" in which he described some of his former Harvard colleagues as "dinosaurs", "mediocre" and "deadbeats"?
Watson's target in the article is the FDA which he says is stifling innovation. From Dr. Watson's remarks in The Wall Street Journal, "The FDA has so many regulations . . . They don't want you to try a new thing if there's an old thing that might work . . . But the regulations are saying you can't do these (new) things until we give you a lot of s--- drugs." I know that many autism researchers and clinicians live in fear that their best treatments, even if absolutely safe, will run afoul of FDA regulations.
An activist for another disease recently asked me why our community didn't do more to support political candidates.
I'd thought that over the previous few weeks I'd explained the situation in which we find ourselves well enough that she wouldn't ask such a question. Apparently, I hadn't. My simple answer is that no politician really wants our support. We're more of a liability than an asset. Any politician who actively supports the "bio-medical" or "vaccines are linked to autism" line of thinking lays themselves open to immediate attack.
I told this activist that the situation of our two communities was vastly different. Their fight with the medical community is over recognition of their disease and whether an infectious agent which might be behind it. Our fight with the medical community is about the disease we believe they caused. It's a pretty big difference.
The question then becomes, how do we win? And by winning I mean a clear understanding of what goes wrong in the body to cause autism, the ways to avoid it, and if your child does have it, what are the options for treatment?
I can say the answer is fight, fight, fight, and our community should be proud of the way we have moved the ball forward. A large number of new parents are very concerned about vaccine side-effects and I think the new Safe Minds public safety announcements being shown in movie theaters in Oregon is also a wonderful development.
But I still struggle with figuring out an effective model of political action for our community.
After reading the wonderful book, Invictus by John Carlin (originally entitled Playing the Enemy) about Nelson Mandela's efforts to lead and ultimately keep South Africa together I felt I may have found a model for our efforts.
I continue to be amazed at the depictions of Nelson Mandela as an almost Gandhi-like figure when even a short review of his life would show he was much more complex. Mandela was the founder of Spear of the Nation, the military wing of the African National Congress. They did actually bomb police stations and other symbols of white power. (Admittedly, this was after decades of trying to negotiate with the white government.) When Mandela was sent to prison for his role in these bombings it wasn't a miscarriage of justice. He actually did plan them.
By Kent Heckenlively
I recently spent three days engaging my "inner geek" by attending the California Science Teacher's Convention in Sacramento. For most people I'm sure the highlight would have been the closing speech by the hosts of Mythbusters, Jamie Hyneman and Adam Savage. But for me the highlight was the speech by professor Kevin Padian, curator of the University of California Museum of Paleontology.
Professor Padian was one of the chief expert witnesses in the Dover trial in which a local school board was trying to adopt a creationist textbook. Now I should probably confess I've been an evolution freak since the age of three when I fell in love with dinosaurs. My job as a science teacher gives me free rein to talk about such issues and also get paid for my eccentric interests.
I don't have much energy for attacking creationists, being a Catholic, and knowing our own tumultuous history of trying to mix faith with science. Although I went to a Catholic college with a Galileo Science Hall, it would still be several years after I graduated that the Catholic Church finally rescinded his excommunication. After a couple centuries wrestling with the issue I think we've come up with a pretty good formulation that "science without faith is blind, and faith without science is lame." I believe in God (I'm actually a eucharistic minister in my parish) and science, but they live in different zip codes.
What really interested me in professor Padian's talk was the masterful way in which he showed multiple lines of evidence for the turning of a fin into a foot, the development of feathers in theropod dinosaurs, and how whales went from land to water animals. Then he said something about creationist arguments against evolution which I felt went to the heart of why so many of us don't trust the medical authorities when it comes to the vaccine-autism issue.
He said that creationist arguments against evolution are "science stoppers" because they discourage the efforts of the human mind to understand evolution in all its complexity.
With voluminous accounts of parents detailing how the problems of their children began after a vaccination it's nothing less than a crime that the medical authorities stop the science by claiming that the question has been "asked and answered." Nothing could be further from the truth. They have refrained from doing the type of population studies of vaccinated and unvaccinated populations which might yield promising information. How about also doing extensive biological studies of their immune systems to see what is going wrong?
Read the Bruesewitz Supreme Court document HERE.
By Kent Heckenlively, Esq.
In an oral argument before the Supreme Court the justices have read all of the briefs and motions. They come to oral argument with their best, most provocative questions. If you get questioned aggressively it doesn’t mean you’re losing. The justice may just want to make sure he fully agrees with your position. If you get a gentle question, don’t imagine you’re winning.
What you should expect at oral argument in the Supreme Court is the very best arguments in favor of your position, and the best arguments against your position. The fifty-nine pages of oral argument can probably be read fairly quickly. In total word count it’s probably akin to twenty pages of a popular novel.
Mary Holland, Esq. was actually at oral argument and will soon be writing her own account of what she observed.
I encourage you to read the entire transcript, although I have to point out some of my favorite passages which will give you a flavor of the hearing.
At one point Justice Sotomayor was questioning Ms. Sullivan, counsel for Wyeth Laboratories on what incentive manufacturers have to take a vaccine off the market if there is no threat of state civil liability and the FDA is the only oversight. After dodging the question several times and trying to move onto another issue, Chief Justice Roberts stopped her and said, “Before you get to that, I think your answer to Justice Sotomayor’s question is: Nothing; the manufacturers have no reason to take the vaccine off the market until the FDA tells them to.” (P. 31)
On the question of why the act creating the Vaccine Court didn’t clearly state it was pre-empting the historic rights of states to compensate its own citizens for injuries caused by design defects in consumer products, Justice Kennedy stated to Ms. Sullivan, “I’m still not clear what answer you gave to Justice Ginsburg’s question, saying: Why didn’t Congress put this out in plain words: There should be no liability for design? Is the answer sloppy drafting? Are you reluctant to give the answer?” (P. 43)
The National Childhood Vaccine Injury Act of 1986 states, "No vaccine manufacturer shall be liable in a civil action for damages arising from a vaccine-related injury or death associated with the administration of a vaccine after October 1, 1988, if the injury or death resulted from side effects that were unavoidable (italics mine) even though the vaccine was properly prepared and was accompanied by proper directions and warnings." (42 U.S.C. section 300aa-22(b)(1))
This is the critical section the United States Supreme Court is taking up in Bruesewitz v. Wyeth, Inc. As with many of these vaccine injury cases the particulars are heart-breaking. The plaintiff, Hannah Bruesewitz, at the age of six months, suffered seizures and subsequent developmental delays after receiving a type of D.T.P. vaccine that is no longer sold. Her injuries had been compensible under the previous table of vaccine injuries, but not under the one at the time her action was filed.
I've wanted to write more about this case for a while but haven't really known what else to say. The language seems pretty clear. If a vaccine is unavoidably unsafe, then you're in vaccine court. If there's a design defect, you get to sue in regular civil court. Since pretty much everything in the world can be made more safely (even dynamite), there has to be a pretty well understood flaw in a product to make it unavoidably unsafe. Since the proponents on the other side are saying vaccines are safe, why should they fear this interpretation?
It's seems to me that not being able to sue in a typical civil court for a vaccine injury is an abomination, not just to the millions I believe have suffered from vaccine damage, but to the entire concept of democracy and the rule of law.
My wife has tested positive for XMRV, otherwise known as the xenotropic murine leukemia virus-related virus.
My daughter with autism has also tested positive for XMRV, a new human retrovirus that was recently found to be highly associated with patients with Chronic Fatigue Syndrome/ME by the Whittemore-Peterson Institute.
What has been discovered and speculated about for chronic fatigue syndrome/ME and XMRV may also hold important information for autism.
By now many of you are probably aware that in August of 2010 the National Institute of Health, Harvard University, and the Food and Drug Administration published an article in the Proceedings of the National Academy of Sciences confirming an earlier study showing that XMRV (xenotropic murine leukemia virus-related virus) is strongly associated with chronic fatigue syndrome/ME. HERE
The earlier study published in the journal Science was a joint study by the Cleveland Clinic, the National Cancer Institute, and the Whittemore-Peterson Institute of the University of Nevada with Drs. Vincent Lombardi and Judy Mikovits as lead authors. HERE The lead author of the NIH/Harvard/FDA study, Dr. Harvey Alter, noted in a press conference that he considered his study a confirmation of the earlier WPI study, even though they had detected different MLV-related viruses (MRVs), rather than only XMRV. There does seem to be a greater variety of MRVs in chronic fatigue syndrome/ME patients than first understood. The WPI’s original study also showed some evidence of additional MRVs. Alter is one of the true giants in the field of virology, having been a co-discoverer of the hepatitis C virus, and winning the Lasker Award for medical research, which is often compared to the Nobel Prize in Medicine in terms of its prestige.
The CDC had also recently published an article in July of 2010 which they were unable to detect the virus in any sample. Their study was published in the journal Retrovirology. HERE
In trying to determine the quality of the work of the various groups it’s probably helpful to refer to what’s known as a journal’s “impact factor” which reflects the reputation of the publication. The higher the impact factor the greater the reputation of the journal. Generally any score above 2 is considered good. By way of comparison, Science has an impact factor of 29.747, the Proceedings of the National Academy of Sciences have an impact factor of 9.432, and Retrovirology has a score of 4.105.
The question of whether XMRV is actually a new human retrovirus affecting people seems to have been put to rest at the 1st International Workshop on XMRV held at the National Institute of Health in Bethesda, Maryland on September 7 and 8, 2010.
The evidence for XMRV infection was so strong that the workshop was opened by the Director of the National Institute of Health, Dr. Francis Collins, who was previously in charge of the Human Genome Project. I’m told Dr. Collins stayed for 75% of the CFS plenary session, listening and asking pertinent questions, leaving little doubt of his interest in the issue.
Okay, so I haven't been out much in the past ten years.
I've gone to two autism events during that time, one in San Francisco and one in Chicago. But when I heard that Generation Rescue and the Ryder Foundation were putting on a night of comedy at the Palace of Fine Arts Theater, near where I used to live in the Marina district of San Francisco I knew I had to go. This would be my third event.
For those of you unfamiliar with San Francisco, the Palace of Fine Arts Theater is a beautiful relic of the 1916 Pan Pacific Exposition designed to celebrate the opening of the Panama Canal. The theater probably seats somewhere under a thousand people and it shares the space with the Exploratorium, one of the country's most unique science musuems. I take my science students there every year on a field trip. It's a hands-on museum at which students can make their hair stand up straight by putting their hand on a Van de Graaf generator, or watch in fascinated horror as one of the volunteers dissect a cow's eye or sheep brain every half hour. It's the highlight of my school year.
I bought one of the expensive tickets which got me into the gourmet food and wine reception before the event and the dessert reception afterwards. As I walked from the car to the theater I saw a big, black stretch limousine (Jenny's?) and at the entrance there were a few photographers, men entering in suits, and tall, leggy women in six inch heels towering over me. I have to admit I felt a little out of place, almost like Frodo amongst a gathering of Men and Elves. (Yes, some of the women were so tall, slender, and endowed with such unearthly beautiful I'm convinced they represent a slightly more evolved race than our own!) But then again, San Francisco always has been a little different than the rest of the world.
Hanging around the entrance to the reception was a regular reader of Age of Autism who describes himself as my number one fan. I've now run into him at all three events I've attended. We greeted each other warmly and he told me I need to stop stalking him. He's a brilliant, unconventional thinker and I always look forward to our discussions. He's usually ahead of the curve in his areas of scientific interest and is one of the many people who make me appear smarter than I actually am.
I also met up with my brother-from-another-mother, J.B. Handley, only the second time we've seen each other in person. However, we e-mail a few times a week and talk regularly on the phone. Usually the conversation goes something like this, "Yes, Kent, that's a good idea but it would cost a lot of money and I'm not sure how much it will advance the cause." Then he reminds me how Generation Rescue is funding a vaccinated/unvaccinated study, paying for kids whose parents can't afford treatment, all while Jenny is trying to put together a television show to try to become the next Oprah Winfrey. We then swap stories about intriguing rumors of a retroviral connection to autism which might also explain some of the health problems of the mothers of many of the children.
(BREAKING NEWS - The NIH has announced a briefing by experts from the FDA and NIH today at 3:00 p.m. EST on their study confirming the Whittemore-Peterson Institute's findings regarding the XMRV virus and chronic fatigue syndrome. The study will be published later today in the on-line version of the Proceedings of the National Academy of Sciences. The Editors would like to congratulate the WPI on this wonderful accomplishment.)
There's a moment in the film Schindler's List in which the accountant, Itzhak Stern shows Oskar Schindler the list of Jews they're saving. The document seems to glow with an almost spiritual light as he says, "This list is an absolute good. The list is life. All around its margins lies the gulf."
Such moments of unsullied heroism are rare, but I traveled two hundred and fifty miles to Reno, Nevada this last weekend to observe one. I'm talking of course about the opening of the Whittemore-Peterson Institute for Neuro-Immune Diseases which is part of the new Center for Molecular Medicine at the University of Nevada, School of Medicine.
All of this transpired because of Harvey and Annette Whittemore and their unrelenting efforts to help their daughter Andrea who suffers from chronic fatigue syndrome (myalgic encephalomyelitis). Along the way they were helped by many physicians like Dr. Daniel Peterson who struggled to understand the epidemic, and lately by Drs. Judy Mikovits and Vincent Lombardi. Like autism, chronic fatigue syndrome has been the subject of scorn and ridicule in the medical community. Even when pioneering scientists showed significant immunological abnormalities among chronic fatigue syndrome sufferers it was difficult to get the medical community to pay attention.
When I say that the vision of the Whittemores for an institute in which the very best of medical science would be harnessed to solve this mystery has been realized, what do I really mean? Here are some facts about this effort. The newly completed Center for Molecular Medicine was built at a cost of $77 million dollars, encompasses more than 115,000 square feet of office space, labs, and patient care areas, and will eventually house approximately 150 researchers and 30 principal investigators.
The Whittemore-Peterson Institute for Neuro-Immune Disorders (WPI) has been in the news most recently for its discovery linking the XMRV virus (xenotropic murine leukemia virus related virus) to chronic fatigue syndrome. The discovery was published in October of 2009 in the journal Science and can be found HERE. There are rumors that this study will shortly be confirmed by new a study coming from the NIH and FDA.
(Author's note - Since we're in the dog days of summer and I need to let several brewing stories develop on their own timetable I submit the following shaggy dog story.)
As a science teacher my summers are spent at home while my wife goes back to her job as a speech therapist. I'm the man of the house, responsible for all appointments for my twelve-year-old daughter Jacqueline who has autism, my normally developing and very active, ten-year-old son Ben, and our five-year-old dog, Bugzy. For the dog lovers among you Bugzy is a mix of terrier and pomeranian, has white fur, and weighs about twenty pounds.
My lovely wife informed me I needed to take Bugzy to the veterinarian for his annual check-up, something I always dread doing. We adopted Bugzy from a rescue shelter as a three-year-old and I had worried when we got him it appeared he had received a double dose of his vaccines before we adopted him.
Now as a parent with a vaccine-injured daughter, a son who went mute for twelve days after his eighteen month series of shots, thus pushing me into a life of activism, concern for my dog should probably rank quite low on my list.
But as I've researched human vaccines I've also become aware of problems with animal vaccines. Yes, I know that they removed thimerosal from animal vaccines long before anything similar was attempted with pediatric vaccines, but still my worry remains.
This web-site has abundantly recounted stories from our community of how the affliction of our children and subsequent efforts to determine what happened to them have earned us the ridicule of the medical community, contempt of the media, and perhaps most surprisingly, a change in attitude from friends and family about our grasp of reality.
I confess this change in attitude hit me with great force. People had always relied on me for my good sense and intelligence. When I graduated from high school my mother gave me a large wooden owl because she thought it symbolized my wisdom. In college I was the school's Rhodes scholar candidate and headed up our delegation to the Model United Nations at Harvard University. In law school I was a writer and editor for the law review. After I got married my father-in-law referred to me as his "own personal Google" for my ability to recall anything from historical and political events to the names of actors from old movies.
But lately I've noticed a new phenomenon. I'm becoming credible again. People value what I have to say.
I noticed it first during this past school year in the staff lunchroom. The issue of vaccines and autism came up and I'd held forth with what I hoped was an abridged discussion of this vast topic when one of the teachers turned to me and said, "When I have kids I'm going to talk to you about what to do." I was momentarily taken aback by this sentiment. I felt it had been a long time since anybody outside the autism bubble was so interested in what I had to say.
I noticed it a few weeks later with the wife of my son's boy scout troop leader. We'd had some discussions before about autism, and she had a great interest in the subject as her own son had shown signs of autism and they endured two years of intensive therapy with him. He still seems to have some Asperger's-like traits, but from my view is essentially indistinguishable from his peers. Whenever she sees me she asks what's new and I inevitably end up sharing the latest research with her and my thoughts on it.