AGE OF AUTISM

The Case Against the Whittemores and the Importance to the Neuro-Immune Disease Community

By Kent Heckenlively, Esq.

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  It has since been retracted, although further research is continuing, and the controversy shows little sign of abating.)

Dr. Wakefield and the Problem of Pseudo-Courts

By Kent Heckenlively, Esq

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. 

Age of Autism Book Review & Contest - I Am in Here

Leave a comment to enter to win a signed copy!

By Kent Heckenlively, Esq.

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.

XMRV (HGRV) is Not Dead - The Rituximab Story

By Kent Heckenlively, Esq.

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.

Dr. Bradstreet, Nagalase, and the Viral Issue in Autism

By Kent Heckenlively, Esq.

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."

The Wakefield Rehabilitation?

By Kent Heckenlively, Esq.

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.

Study Finds XMRV Retrovirus Can Infect Brain Cells

By Kent Heckenlively, Esq.

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."

Let's Really Talk about XMRV and Autism

By Kent Heckenlively, Esq.

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. 

Faith

By Kent Heckelively, Esq.

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.

How Vaccines Might Cause Autism and Other Diseases

By Kent Heckenlively, Esq.

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.