The Potential Importance of the XMRV Retrovirus to Autism
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.
Understanding the role of inflammation also sheds some light on why the gluten/casein diet works for some people, like it did very effectively for my son, Ben. XMRV is a slowly replicating virus, so that any inflammation acts like fuel for it. We quickly got him on the gluten/casein free diet, and so we in essence starved the virus, allowing his immune system to launch a very successful attack.
Stress (cortisol hormone) – The cortisol hormone will promote replication of XMRV. I find this interesting because in its’ initial modern presentation in the 1980s chronic fatigue syndrome/ME seemed to strike mainly high-powered professional people who were often under a good deal of stress. From the standpoint of the autism community I find this intriguing because the most successful therapy program for my daughter has been the Son-Rise program which endeavors to create a loving and supportive environment around the child. It has in no way been a cure, but it has been an excellent way in which to interact with her. Many families I know have had good success with Son-Rise or other programs with similar philosophies and understanding this aspect of XMRV provides an explanation for those results.
Sex hormones (testosterone and estrogen) – The sex hormones promote replication of XMRV. Our community has long noted the 4-1 gender disparity between boys and girls stricken with this disorder, as well as the fact that when girls are affected, they tend to be the more severe cases. I also have to note that for those with seizure disorders, particularly the girls, tend to have an increase in their seizures as they enter puberty. I also have to point out that there is a group in the autism community who encourages the use of the medication, Lupron, which has the effect of blocking testosterone. Other medications which may block hormones are also on the market.
Low glutathione levels – Those with chronic fatigue syndrome/ME and autism both tend to have low glutathione levels. Low glutathione levels will increase susceptibility to viral infections, increase virulence, and impair resolution of viral infection. Our community has long reported positive effects from high levels of supplemental glutathione.
Problems with methylation - Autism researchers have long noted that there appear to be problems with methylation (cell to cell communication) in children with autism. Numerous physicians have come up with strategies for overcoming these blocks, but the question of why there should be such problems with methylation have remained unanswered. XMRV researchers have found that XMRV integrates preferentially at the start of CpG islands in the human genome, at locations essential for proper methylation. This simple finding more than anything else may explain the variety of abnormalities in the immune and neurological systems of children with autism. A recent publication on XMRV affecting gene expression can be found HERE.
High cytokine levels – Cytokine levels are markers of inflammation in the body and the results from children with autism tend to show high levels, particularly things like TNF-alpha. A recent test from my daughter showed her TNF-alpha levels at more than 6x normal. This is a level which might be found in an AIDS patient. (After two months on a TNF-alpha blocker I have been able to reduce this marker by approximately 40%, although it is still high.) Many commentators have noted how the immune profiles of many children with autism resemble those of AIDS patients, but without the deadly outcome of HIV.
The natural killer cell anomaly - One of the hallmarks of infection by the HIV retrovirus and the subsequent development of AIDS is low numbers of natural killer cells which would normally fight off infection. Thus, during the AIDS epidemic one of the common questions asked was the level of somebody's B or T cells. Curiously, my daughter has slightly elevated levels of natural killer cells. High cytokine levels and normal or elevated levels of natural killer cells make no sense. To make an anology, it's a little like saying there's a neighborhood with a lot of cops walking the beat, but the crime rate keeps going up. Aren't the police making arrests? And if not, why not?
Similar observations made by Dr. Jeff Bradstreet have recently led him to conclude that whatever is happening in our children's bodies (and he believes some sort of viral infection to be at the root of it), is effectively bliding the immune system. Figuring out how to restore sight to the immune systems of our children might be a very effective tool in fighting this retrovirus.
Vitamin D abnormalities – One need look no further than the pale faces of our children to know something is wrong with their levels of vitamin D. I’ve listened to many conflicting theories about how to fix these vitamin D abnormalities and I don't know which of them is correct. However, it seems there is broad agreement among many groups that something is wrong in regards to vitamin D, and possibly the vitamin D receptor. This is from a recent article in Columbia magazine describing the work of scientists Mady Hornig and Ian Lipkin.
When they looked for metabolic differences between the Norwegian children who’ve been diagnosed with autism versus those who don’t appear autistic, they discovered that the autistic kids are three times as likely to have elevated levels of a protein found in people who are vitamin D deficient; the body produces it in a desperate attempt to squeeze as much benefit as possible from the vitamin D that it does receive . . . Hornig’s previous research provides some clues about what to look for. She’s demonstrated in laboratory studies that mice who experience viral or bacterial infections early in life go on to display autistic-like behaviors: they avoid each other and do back flips obsessively. Hornig suspects that a lack of vitamin D can exacerbate the dangerous effects of an infection, as the vitamin is known to bolster the immune system. HERE
Co-Infection by Other Pathogens – The current hypothesis is that XMRV sets up an immune deficiency in the body, thus rendering it vulnerable to infection by other pathogens such as Epstein-Barr, CMV, HHV-6 (my daughter is also positive for HHV-6, type B) and bacterial infections as well. What is not known, but strongly suspected, is that this mosaic of infections increases the severity of the disease process in the patient.
Other commonalities between patients with Chronic Fatigue Syndrome/ME and Autism – Both groups share common clinical symptoms such as immune disregulation, increased oxidative stress, heavy metal retention, and mitochondrial insufficiency. Heavy metal retention would be a consequence of a lack of energy, as well as increasing the virulence of any pathogen. Many have observed that in addition to their ability to remove metals from the body, chelators often have strong anti-viral properties.
Contamination issues – There is a political dimension to the charge of contamination, namely that those with chronic fatigue syndrome/ME have psychological problems, rather than a devastating neurological and immune disease. The original research performed by the Whittemore-Peterson Institute which linked XMRV to chronic fatigue syndrome/ME used four different forms of detection, including:
1. Serology,
2. Western blot,
3. Isolation of proviral DNA, and
4. Isolation of virus in cell culture.
In addition XMRV particles have been photographed by electron microscope as they have exited from the lipid membrane of an infected cell, an impossibility for a lab contaminant. (I have provided a picture of this at the top of my post.)
The negative studies have generally only used polymerase chain reaction (PCR) without first using techniques to increase replication of the retrovirus. The retroviral particles are fragile and continued thawing and refreezing of blood samples can destroy evidence of the retrovirus. Proper blood storage and testing procedures are critical.
One need only consider that Canada, the United Kingdom, Australia, and the United States have all approved a ban on blood donations from persons who have ever had chronic fatigue syndrome/ME to understand the severity of this threat as perceived by public health officials, even though many questions remain unanswered. The recommendation by the FDA panel was probably the strongest in the world, adding a specific question to their intake form about chronic fatigue syndrome/ME.
There has also been strong criticisms of the selection of patients, who in the eyes of many did not even have a diagnosis of chronic fatigue syndrome/ME, but rather lesser conditions like depression. Other commentators have pointed out that the blood in test tubes cannot make anti-bodies to a lab contaminant. Only the body can make anti-bodies. Anti-bodies to XMRV have been found in patients with chronic fatigue syndrome/ME as well as my daughter with autism.
The claims of contamination may be quickly dispatched if accounts of a recent breakthrough in genomic research are to be believed. According to these accounts the bio-tech company, Chronix Biomedical has developed the ability to read an entire human genome within six hours. This has given them the ability to identify those areas in which XMRV has inserted itself into the DNA of those with chronic fatigue syndrome/ME.
These reports claim Chronix has looked for and found the predicted flanking DNA sequences on both sides of XMRV recovered from human samples and are expected to publish these findings in the next few months. Lab contaminants do not insert themselves into DNA. If this account is true it will be powerful scientific validation of XMRV as a significant human pathogen. A recent review of these issues was published by the University of Hamburg and can be read HERE.
Where did XMRV come from? – I thought I’d quote from a recent letter published in The Lancet entitled "Mouse Viruses and Human Disease." While it began by noting the claims of contamination it quickly seemed to take the opposite point of view.
Nevertheless, the paper by Lombardi and colleagues that began this debate provided solid evidence based not only on the molecular identification of the virus, but also on the immunological responses of the host (virus-specfic antibodies), viral expression in patients’ peripheral blood mononuclear cells (flow cytometry), and an infection model (infection of cultured human cells from patients’ samples). The immunological and infection evidence cannot be explained by nucleic acid contamination. Thus, the only explanation for the molecular evolution data, from a study by Hue and colleagues, is that patients have been infected by a common source of XMRV and not through human contact.
Once a virus is endogenised, it is forced to follow the evolutionary rate of the host. Since XMRV is integrated in cell-lines the virus evolution is restricted to the host’s pace of evolution, and viral descendants have none or minimum sequence diversity. Thus, if a contaminated product, previously cultured in cell-lines is administered to people then the infections would provide the evolutionary patterns reported by Hue and colleagues. If the immunological data reported by Lombardi and colleagues are correct, then we need to trace the common source for these infections to prevent possible public health concerns. Products from cell-lines should be the first candidates. HERE
It’s difficult to escape the conclusion that what they’re talking about are vaccines which often use viruses weakened by passing them through animal tissue. What other biological products are "cultured in cell lines" and "administered to people"?
Could we be looking at a vaccine "two-fer" in which not only was this retrovirus created and spread through the process of developing a vaccine, but that once established in the human population, subsequent vaccines, even if they didn’t contain XMRV, would stimulate replication in those already infected?
Sometimes you think you understand everything about a given subject, then you get new information and think to yourself, "My God, could it be even worse than I’d imagined?" I have had many such moments in my investigation of XMRV. You can read more from my previous article HERE
Closing – As I end my opening statement I hope what follows is not a trial, but a robust discussion in the autism community on whether the idea that XMRV may be linked to the problems of our children is a valid area of inquiry. I must note that the autism community has already developed tools to attack many of the problems which are linked to XMRV, from ways to lower inflammation, to normalizing glutathione levels, fighting other pathogens, and overcoming blocks to methylation.
Physicians like Dr. Jeff Bradstreet are also looking at may possibly be new tools in this fight, such as getting the vitamin D receptor to work properly, thus avoiding the need for anti-retrovirals. These may pose risks to the health of many of our children, (particularly in their common impairment of mitochondrial functions), which cannot be fully evaluated at this time. If the immune system can be restored to proper functioning it may be enough to overcome any lingering XMRV or other pathogens. The headline from a recent post by Dr. Bradstreet read, "Why I Am More Hopeful Than Ever about Autism, ME/CFS . . . TNF-Alpha, and the Viral/Pathogen Connection" HERE and then proceeds to discuss many of the very same issues I have covered.
After our robust discussion it's my hope that there will be renewed optimism about strategies which may help those children who have not yet enjoyed the benefits of recovery.
Kent Heckenlively is a Contributing Editor to Age of Autism
John, when did they start to screen host mamalian inoculant species (mice and rats)for cross mamalian DNA/RNA contamination once they had completed the mapping of the human genome and the protein ?
I think you will find its 2004.
When did they finish the cross mapping of the mamalian inoculant host species (like mice rats and pigs)for cross mamalian DNA/RNA contamination ?
I think you'll find its after 2005.
Why did they switch to pigs so quickly in 2004 with the subsequent Global scare about swine flue ?
Could it have been because they found MLV's in the host vaccination stock ?
Does the possibility lie in that prior to 2004 mamalian inoculant host species (like mice and rats) could have been contaminated with dormant virus's, dormant virus's that induce cancer and other diseases to humans and parts of other mamalian DNA/RNA sequences that are alien to the host and potential contaminants to human DNA/RNA expressions?
Is it possible that the mamalian vaccination host breeding population of animals like mice and rats were impure and a proportion contaminated, but prior to the DNA/RNA assay screening of all vacination host mammals we could have been ignorant of these dormant 'time bombs' and inoculated parts of human populations with contaminated products?
I think you will find that in @2020 there will be a short burst of a 'newly diagnosed' retrovirus disease in the human popuation because once they had discovered contamination amongst the lab mice population (Murine Leukemia Virus and XMRV)they immediatly switched to pigs to grow vaccines but it took them a year to DNA/RNA assay screen across all the host vacination pigs for cross mamalian contamination and any alien virus's like Retrovirus's.
Posted by: Alistair | August 27, 2011 at 01:56 AM
John said, "Retroviruses do not require a weakened immune state in order to take hold, they are themselves perfectly capable of tweaking and changing host immune function in ways that allow them free reign."
I agree John, I'm MLV posative and therefore read and undertood as much as posible about Retroviruses.
Kent what if a virus has smacked the pineal gland and very low melitonin, almost TNF-A and almost no IL-6. Do people with Autism have dysregulated TNF-a levels not down regulated TNF-a ?
Posted by: Alistair | August 27, 2011 at 01:20 AM
Just want to say that I agree with Beth.
I think it might be very informative to test some lab mice for multiple viruses and retroviruses before and after poisoning them with various levels of some of the toxins implicated in this mystery--e.g. mercury, aluminum, lead. Perhaps before and after giving some of the mice tylenol, or repeated doses of antibiotics as well.
Posted by: Sue | May 20, 2011 at 12:23 AM
Thank you, Kent. A wonderful 'opening statement.' I look forward to the discussion in our communities about XMRV also. Support the WPI!!
Posted by: Justin Reilly, esq. | May 19, 2011 at 09:30 PM
Great post. My son has autism, and I suffer from Chronic Fatigue Syndrome and possibly Fibromyalgia. More research MUST be done on XMRV and autism!!
Posted by: Jenny | April 20, 2011 at 01:04 PM
@John Fryer Chemist ... I'm sorry but your knowledge about humans and their evolution must be incredibly limited.
Actually retroviruses have been around for hundreds of millions of years. They have been affecting humans, and other primates, as long as we have walked the earth. They are an intricate part of our evolution. A huge chunk of our DNA is actually retroviruses.
There is any number of articles on the evolution and history of human retroviruses. Your theory that they are "new" to humanity within the last century is beyond laughable.
Posted by: scott | April 15, 2011 at 06:01 AM
JuLia Hugo Rachel@ "it would make sense to me that the WPI does more extensive studies immediately..."
WPI is starved of funding.
NIH has repeatedly turned down all their research applications. They pretty much rely on patient donations at the moment :(
http://www.wpinstitute.org/help/index.html
join http://www.anida.co/ - raising awareness and funds for the important research into the underlying causes of neuro-immune diseases
wpi on facebook http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671
Posted by: Natasa | April 12, 2011 at 05:42 PM
Nicely presented.
XMRV+, long family history of ASD & Alzheimer's, & mother of autistic child
Posted by: Nis9 | April 12, 2011 at 04:37 PM
Kent, you said that you was able to reduce TNF-alpha levels by approximately 40%, with a TNF-alpha blocker. What kind of drug you used?
Posted by: Fromitaly | April 11, 2011 at 12:12 PM
OBSERVATION or MODERN SCIENCE
Before getting too excited about this new virus we need to remember that what comes first.
If we are ill then we are ill.
Is it a virus or a chemical toxin or as many claim mass hysteria.
We need to give more credence to OBSRVATION and let those who think its this virus or a figment of their imagination to reflect that whatever the cause people are SUFFERING.
Time as said to DO SOMETHING other than have an expensive debate that sucks up all the funds and leaves those injured HIGH and DRY and without much hope.
Posted by: John Fryer Chemist | April 11, 2011 at 05:01 AM
Retroviruses
My understanding of retroviruses is that man had no such illness until the advent of gene splicing technologies first employed by Nobel Prize Winner Paul Berg. His process was called then, hybridisation and he used SV40. This may or may not have been responsible for AIDS. Contaminated GMO or even uncontaminated GMO vaccines may have contributed to this modern disaster neatly blamed on a marginal section of society.
Various retrovirus illnesses have appeared since in ever increasing perhaps epidemic numbers.
The discovery of yet another retrovirus involved in illnesses that sap our strength (XMRV Retrovirus) ) is discouraging in that nobody in the scientific world is willing to admit the continuing catastrophes of shoddy science and even shoddier ideas of risk benefit. We have no idea of the origin of disease A, B ... AA, AB, ... AAA, AAB, AAAA, AAAB and certainly not XMRV etc.
Wherever you look today in our technological world you see one catstrophe of modern man being out beaten by yet another technological cock up. The scientific rerun of some athletic record?
The only truth from all this is that this virus is certainly not the only thing that makes us tired and ill and so leaves openthe shoddiest science of today,that of epidemiology to enable a few « fat cats » to become millionaires by explaining that actually it's not the misunderstanding and inappropriate uses of modern technology that is causing catastrophe but that we haven't got a clue why this illness or that illness is now epidemic but by further expensive research into our genes we can implicate yet more chromosomes and yet more gene fragments to explain why ancient man never had much of this or that illness but today it is epidemic.
Time to look at the WORST CASE SCENARIOS and stop sitting on our hands claiming IGNORANCE of these events.
Posted by: John Fryer Chemist | April 11, 2011 at 04:36 AM
Retroviruses do not require a weakened immune state in order to take hold, they are themselves perfectly capable of tweaking and changing host immune function in ways that allow them free reign.
Posted by: Natasa | April 10, 2011 at 06:22 PM
This is a great and comprehensive assessment of the XMRV issue, because as we are learning, the etiology of all "chronic illnesses" (autism, Alzheimer's, heart disease, CFS, Lyme, Parkinson's, etc.) has an infectious/inflammatory component. Research continues to demonstrate a link between pathogens such as HSV-1 and Alzheimer's or Parkinson's and Borrelia burgdorferi, etc. However, I think we would be wise to go back and try and understand why we (and our children) are so susceptible to these pathogens (whether they be XMRV or EBV or HHV-6)--why are we all so immunocompromised? Why are there some people who can carry EBV, or borrelia, or XMRV or HHV-6 and remain unaffected? There is no question that we are talking about virulent and complex pathogens that have a tremendous ability to suppress our immune function and cause complex and damaging systemic problems. However, we need to be thinking about what we can do to strengthen our immune function so that these pathogens do not take us down. I think Sydney Baker said it best years ago when he said "It's the flora, stupid!", meaning that we need to pay attention to what we (as a society) have done to the human microbiome, our first line of defense against all pathogens and the seat and heart of our immune system. We are still operating within Pasteur's paradigm--blaming the pathogen for disease. Maybe we need to look harder at Beauchamp's assertion that it is the terrain that matters. If you look at the history of the autism epidemic, you need to look at it in the context of other epidemics (allergies, asthma, autoimmune diseases, Alzheimer's, Parkinson's, colitis, Crohn's disease,CFS, etc)--all of these diseases are skyrocketing in the developed world. Why? Because we have changed our terrain (and YES, the pathogens like XMRV do matter) through antibiotics, toxic exposures, low vitamin D through reduced outdoor exposure, immune-dysregulating vaccines, etc. This is a man-made epidemic. The question remains, can we reverse the damage done to the human microbiome? I wish we would invest research dollars to find the answer to this question.
Thanks for your article--I found it very interesting.
Beth Lambert
www.acompromisedgeneration.com
www.epidemicanswers.org
Posted by: Beth Lambert | April 10, 2011 at 04:47 PM
I have had to deal with 200 cases of cancer and I never saw a case of cancer in an unvaccinated person ...Dr. W B Clark New York Press 26th January 1909. 1909!!
Posted by: barbaraj | April 09, 2011 at 07:06 PM
The arrogance, we humans. To think that we can "mess" with the genius of the immune system and not suffer untold consequences! I am of the opinion that ANY human condition that affects the immune system in any way at all, can be treated and/or prevented ONLY by first looking at vaccines as the initial cause. Until proven otherwise, why wouldn't we think that vaccines could be the root impetus for 99% of human-health suffering?
Posted by: Cynthia Cournoyer | April 09, 2011 at 05:55 PM
I don't want autism to become the "cold case" which seems to have happened with Kawasaki, little money, little research. I so enjoy the activity, across the board, the thoughts and ideas that are thrown out to possibly seed the brain of a researcher that may indeed find the "culprit".
I was reading today,
"The Emerging Rold of Telomerase Reverse Transcriptase in Mitochondrial DNA Metabolism"..of course little was understood, but I trudged through to the end hoping to pick up a piece of evidence..and there it was..a piece...maybe not the most important piece..but a description of what oxidative damage can do to disrupt the health of the living thing, the opportunitistic illnesses that are held at bay by HEALTH .
The vaccine program has denied the damage, yet the science itself admits it's (1983 hiv) on the topic and understanding of mitochondrial damage. It's new!!
Then I traveled to my favorites, the metals that cause such oxidative damage..within.."Susceptibility of mitochondrial //
Aluminium has been implicated in various neurodegenerative diseases but exact mechanism of action is still not known. Mitochondria being a major site of reactive oxygen species production are considered to be target of oxidative stress and it seems that the oxidative damage to mitochondrial proteins may underlie the pathogenesis of aluminium induced neurodegeneration
http://www.ncbi.nlm.nih.gov/pubmed/19010380
now..in my thinking, the first study concluded that the general health will be beset by pathogens once the mitochondria is damaged , the other states aluminum on it's own.. There will be research that takes autism out of the realm of inherited genes into a different new light suggested by "newer" science and find that all of these things are part of the puzzle and they will fit nicely.
THEN we can go to work to fix it! No harm in reducing oxidative stress on the way!
Posted by: barbaraj | April 09, 2011 at 02:12 PM
Kent:
Thanks for the last post. I see it is very complicated, of course it is, if it was simple we would not all be in this mess.
Posted by: Benedetta | April 09, 2011 at 12:52 PM
I completely disagree about the autism community effectively combating XMRV through glutathione and methylation. I do not know one child who has "recovered" with these methods and I believe their benefits are overestimated.
We are doing XMRV research and WPI a grave misdeed by focusing on these treatments. Even Dr. Mikovits has stressed immunemodulating therapies and treatment of co-infections.
I think that stating methylation and glutathione supplementation as proper treatments of XMRV not only trivializes a very serious retroviral infection but also keeps the mainstream medical community from taking our illness seriously!!
Posted by: Jen | April 09, 2011 at 12:10 PM
Just thought all of you might be interested in recent testimony given on Friday, April 8, 2011 at the State of Knowledge Conference by Dr. Judy Mikovits:
Mikovits: I would like to say that what I've seen here this week says that, clearly, XMRV at best, what we originally set out to do 5 years ago was a systems biology approach. We used those genomic technologies by Gene and Mary Carrington. We used a microarray from the NCI to screen all the pathogens. And what we saw was what we heard from Mary Schweitzer, that a lot of active pathogens and things like shingles, things like enteroviruses, things like EBV, CMV, HHV6--they're all totally on in that microarray. In NCI's infinite wisdom, it didn't put XMRV on it, so that's how we ended up going back. But we didn't look with a hypothesis for retroviruses.
We took the systems biology approach, collected samples from patients who had the well-defined characteristics that Tony Komaroff talked about and that were in the Lo Study and Dan Peterson had done--these patients--had data on them for decades. We took samples over three years. So it wasn't that we found the virus in every sample. It was like the macaque study, where it quickly went into the tissues, like the mouse study that came out this week that said the antibody responses were weak and transient. We don't know everything about this virus.
But HIV does not cause AIDS. The CDC definition is HIV and one of 25 co-pathogens. So the Lyme, the EBV, the enteroviruses, Martin Lerner's patients who don't get better with Valcyte. This is a reasonable hypothesis because we see the same thing. We've developed a cytokine signature that is distinct from Nancy's cytokine signature and from Ben Natelson's. So this is a marker to follow on clinical trial improvement, but there's no doubt these people are infected. With HTLV-1, if you're seropositive and you're sick, you can get some kind of treatment.
I'm not saying antiretrovirals. I'm saying immune modulators. So the patients that are found to be infected now--and there are thousands of them--need something now, not three years from now when Lipkin decides there is an association. Whatever their disease is, they're sick. And I know John--Chia--has patients who are co-infected and they don't treat the same way, so we can get together with the physicians who have co-infected patients. Even Lyme doctors, whom we are working with across the country. We can start doing something now. Take it out of CFS. It's not about CFS. It's about a retrovirus we don't understand very well. As Frank Ruscetti said at a meeting a month or so ago, "If this were HIV, it would be 1983." That's all.
Vernon: Judy, I think you need to be careful. You said when Lipkin decides whether XMRV is real.
Mikovits: I know. It's when the Lipkin study... I'm not saying anything. Lipkin is a wonderful man. I'm saying when the Lipkin study is done is two years from now. The way it's set up there's 1300 samples and I've got to do what I do, and it takes two months on every one of them. Oh yeah. Great.
Posted by: Kent Heckenlively | April 09, 2011 at 09:51 AM
Great coverage of this issue. My hope is that in our quest to help children who may be affected by XMRV, physicians will first do no harm by resisting the use of strong anti retrovirals (at least in their initial treatment). The kids are weakened and vulnerable and respond more favorably to natural immune supporting strategies. We are blessed to have cutting edge thinkers like Jeff Bradstreet, Stephanie Cave and others on a mission to find safe and effective solutions. Maureen McDonnell, RN www.YourHealingRetreat.com
Posted by: Maureen H. McDonnell, RN | April 09, 2011 at 09:34 AM
This is a fantastic perspective and discussion. Yet, until the "Jury is OUT on XMRV", I feel there is not enough "evidenced based" data to substantiate any type of legitimate conversation about this issue. We can hypothesise and theororise all day long. But to what end and what for?
As an attorney, you must know that the burdent of proof in on the plaintiff.
In Science, it is the opposite. The burden of proof is on the defendent.
Thinking about this issue from a legal standpoint, it would make sense to me that the WPI does more extensive studies immediately to prove what they are saying. Unless their work can be replicated, unless their work is even tried to be replicated, unless their work wants to go forward, it oonly makes sense from a legal standpoint to conduct more studies. The proof is in the Pudding.
On the Flip side.....certain Doctors in The United States are already using VIPdx labs for XMRV to test their patients and are treating them. The treatments are shaky at best. My son and I are XMRV+.
Speaking of pudding......we need expensive pudding called FUNDING. Funding to find the Facts. Funding to know the Evidence. Funding to link our thoughts to truth, not science fiction.
The only way that Autism/CFS/LYME/GWI are going to get the funding they deserve and need is through Political Action. No amount of words on Earth will further this cause. The only means by which ton attain the scientific data and facts we need; is through serious Professional Political Action.
I believe this will be the next wave of advocacy as patients are fed up with myths, speculkation and of being disallusioned.
Posted by: JuLia Hugo Rachel | April 09, 2011 at 03:03 AM
I don't know if I am XMRV positive or not, but I thought I'd share my history...I believe CFS an Autism are related somehow. I am a 36 y/o female. Not a well child from birth - severe allergies, chronic infections, fully vaxed by 1970s guidelines. A couple times I remember I got a high fever and this caused my brain to malfunction in a way that made numbers start running thru my head and I couldn't shut it off. It was frightening. Looking back, it seemed like a rather autistic-type symptom. Then at age 18, I get an MMR booster "required" for college. Within 24 hrs I was extremely ill, and diagnosed with Mono, bedridden for a month. My health has steadily declined since then and have been diagnosed with ME/CFS/FM. I stopped working 2 years ago and am now on disability. I live with my Mom, no children. This disease has robbed me of a life. Even if I could I wouldn't have children due to risk of passing something to them. The only clinical findings so far have been reactivated/chronic EBV and adrenal fatigue. Because I am at about 30% functioning and scared to get even worse, I am now having the Yasko Methylation genetic test done and something called the Genova MAP test. I pray I can continue to keep my head above water, I do not want to become bedridden.
Posted by: CFS-Sufferer | April 08, 2011 at 11:31 PM
Another great book on this - The Myth of Autism by Dr. Michael Goldberg who's been successfully treating children from a medical disease perspective instead of that of a developmental disorder.
Posted by: Karen | April 08, 2011 at 11:23 PM
I agree with notquietthereyet. XMRV might be a secondary infection due to a weakened immune state. I suspect that the primary cause is the detox defect that results in all other issues. Genes can predispose an individual and vaccines or other environmental triggers can weaken the bodies ability to detoxify. I think many other viruses will be found inindividuals with ASD.
Posted by: EV | April 08, 2011 at 10:47 PM
the end result will not be xmrv...it will turn out to be ciguatara epitope toxin with radiation poison and verhighly likely 45% of the hiv virus envelope with mycoplasma and c.pneumonaie which was created in a u.s. military lab as a bio-warfare agent...these same agents were sold to suddam hussein to use against the iranians during the 10 year war and suddam also unleashed these in desert storm and 'yes' it is already in the world vaccines and in the food supply...it is a 'massive cover-up'...sincerely aidan walsh southampton, u.k. by the way stat-1 is disrupted due to ciguatara not xmrv...also all of these illnesses are the same with different 'planned labels'and the link is there to myelodysplasia and leukemic type cancers...the nih/cdc and british phyco-babblers have a vested interest in this ilegal warfare program....heads are now going to spin and let the criminal and public enquiries in world courts begin....
Posted by: aidan walsh | April 08, 2011 at 09:30 PM
Sometimes I wonder if the biological function of viral agents might actually be pollution detox which, if that is possibly true, makes it ironic that we inject pollution to enhance our immune response to "inactivated" (and contaminated) versions of these agents.
Posted by: JenB | April 08, 2011 at 08:36 PM
Well, it seems reasonable.
It does seem to fit really, really well together. The puzzle pieces seems to be fitting and making almost a complet picture of what is going on.
Still I have some questions????
My children reacted to the DPT shot-- really bad!
My daughter reacted to the Hep B and flu shots, pretty bad.
My mother reacted to the flu shot.
My husband reacted to a tetanus shot (that I think was a DTaP)
But they did not even raise a fever, nor any reaction when it came to the MMR,or the pneumonia shot, or the diptheria/tetanus shot (not including my husband here because I suspect but not sure about the DTaP).
Why?
Does not the MMR, Diptheria, and pneumonis and oh yeah, hip not also cause inflamation?
And no disease that they had (and there were many) flu, colds, strep, sinus infections, or any sickness every made them react like they did to the Whooping cough vaccine.
Don't infections and disease cause inflammation?
Posted by: Benedetta | April 08, 2011 at 06:45 PM
Just want to thank you for your dedication to the autism community. Great article! Very informative, and you are definitely an intelligent person!
Posted by: Heidi N | April 08, 2011 at 05:33 PM
FURTHER READING ON
Brain vascular endothelial inflammation, permeability and constriction:
Tanaka M et al. (Sep 1996). “Evidence that brain capillary endothelial cells can be infected with murine leukemia retrovirus, LP-BM5”. Neurodegeneration 5(3):287-91.
Afonso PV et al. (Nov 2008). “Alteration of blood-brain barrier integrity by retroviral infection”. PLoS Pathog. 4(11):e1000205.
Masuda M et al. (Jan 1996). “Effects of subtle changes in the SU protein of ecotropic murine leukemia virus on its brain capillary endothelial cell tropism and interference properties.” Virology 215(2):142-51.
Kustova Y et al. (Aug 1999). “Increased blood-brain barrier permeability in LP-BM5 infected mice is mediated by neuroexcitatory mechanisms”. Brain Res. 839(1):153-63.
Autonomic/vagal stem dysfunction:
Benchimol-Barbosa (Aug 2009). “Circadian cardiac autonomic function in perinatally HIV-infected preschool children”. Braz J Med Biol Res. 42(8):722-30.
Plein D et al. (Jan 1999). “Cardiac and autonomic evaluation in a pediatric population with human immunodeficiency virus”. Clin Cardiol. 22(1):33-6.
Neild PJ et al (Aug 2000). “Delayed gastric emptying in human immunodeficiency virus infection: correlation with symptoms, autonomic function, and intestinal motility”. Dig Dis Sci. 45(8):1491-9.
Konturek J et al (Mar 1997). “Disturbed gastric motor activity in patients with human immunodeficiency virus infection”. Scand J Gastroenterol.32(3):221-5.
Hyperplasia of intestinal epithelial cells:
K Suzuki et al. (1997), “Induction of intestinal lesions in nu/nu mice induced by transfer of lymphocytes from syngeneic mice infected with murine retrovirus”. Gut. 41(2): 221–228.
Pancreatic enzyme deficiency, maldigestion, disaccharide intolerance:
Carroccio A et al. (1998). “Pancreatic dysfunction and its association with fat malabsorption in HIV infected children”. Gut. 43(4):558-63.
Yolken RH et al. (Mar 1991). “Gastrointestinal dysfunction and disaccharide intolerance in children infected with human immunodeficiency virus”. J Pediatr. 118(3):359-63.
Posted by: Natasa | April 08, 2011 at 05:00 PM
FURTHER READING ON:
CNS pathology in murine retroviral infection - Neuroinflammatory responses including activation of astrocytes and microglia:
Wiley CA, Gardner M (1993). “The pathogenesis of murine retroviral infection of the central nervous system”. Brain Pathology 3: 123–128.
Peterson KE, Du MI (2009). “Innate immunity in the pathogenesis of polytropic retrovirus infection in the central nervous system”. Immunol Res.43(1-3):149-59.
Robertson SJ et al. (1997). “Neurologic disease induced by polytropic murine retroviruses: neurovirulence determined by efficiency of spread to microglial cells”. J Virol. 71(7):5287-94.
Xue QS et al. (2010). “Microglial response to murine leukemia virus-induced encephalopathy is a good indicator of neuronal perturbations”. Brain Res. 1319:131-41.
Peterson KE et al. (Jun 2004). “MCP-1 and CCR2 contribute to non-lymphocyte-mediated brain disease induced by Fr98 polytropic retrovirus infection in mice: role for astrocytes in retroviral neuropathogenesis”. J Virol. 78(12):6449-58.
Karin E et al. (Mar 2001). “Differences in cytokine and chemokine responses during neurological disease induced by polytropic murine retroviruses map to separate regions of the viral envelope gene”. J Virol. 75(6): 2848-56.
JL Portis et al. (Dec 1995). “Characterization of a neurologic disease induced by a polytropic murine retrovirus: evidence for differential targeting of ecotropic and polytropic viruses in the brain”. J Virol. 69(12):8070-75.
Peterson KE et al. (Jul 2006). “Increased proinflammatory cytokine and chemokine responses and microglial infection following inoculation with neural stem cells infected with polytropic murine retroviruses”. Virology 354(1):143-53.
Peterson KE et al. (2009). “Innate immunity in the pathogenesis of polytropic retrovirus infection in the central nervous system”. Immunol Res. 43(1-3):149-59.
Czub M et al. (Dec 1995). “Murine leukemia virus-induced neurodegeneration of rats: enhancement of neuropathogenicity correlates with enhanced viral tropism for macrophages, microglia, and brain vascular cells”. Virology 214(1):239-44.
Nagra RM et al. (Aug 1994). “Viral load and its relationship to quinolinic acid, TNF alpha, and IL-6 levels in the CNS of retroviral infected mice”. Mol Chem Neuropathol. 22(3):143-60.
Sei Y et al. (May 1998). “The encephalopathy associated with murine acquired immunodeficiency syndrome”. Ann N Y Acad Sci. 840:822-34.
Koustova E et al (Mar 2001). “LP-BM5 virus-infected mice produce activating autoantibodies to the AMPA receptor”. J Clin Invest.107(6):737-44.
Basile AS et al. (Dec 2001). “IgG isolated from LP-BM5 infected mouse brain activates ionotropic glutamate receptors”. Neurobiol Dis. 8(6):1069-81.
Espey MG, Basile AS. (Apr 1999). “Glutamate augments retrovirus-induced immunodeficiency through chronic stimulation of the hypothalamic-pituitary- adrenal axis”. J Immunol. 162(8):4998-5002.
Kustova Y et al (May 1998). “The pattern of neurotransmitter alterations in LP-BM5 infected mice is consistent with glutamatergic hyperactivation”. Brain Res. 793(1-2):119-26.
Posted by: Natasa | April 08, 2011 at 04:55 PM
FURTHER READING ON
Neurophysiological abnormalities and developmental and behavioral outcomes in animal models of retroviral infection:
Prospéro-García et al. (Nov 1996). “Microglia-passaged simian immunodeficiency virus induces neurophysiological abnormalities in monkeys”. Proc Natl Acad Sci U S A 93(24): 14158–14163.
Berman NE et al. (Dec 1999). “Microglial activation and neurological symptoms in the SIV model of NeuroAIDS: association of MHC-II and MMP-9 expression with behavioral deficits and evoked potential changes”. Neurobiol Dis. 6(6):486-98.
Cheney PD et al. (Aug 2008). “Behavioral and neurophysiological hallmarks of simian immunodeficiency virus infection in macaque monkeys”. J Neurovirol. 14(4):301-8.
Podell M et al. (Jul 1993). "AIDS-associated encephalopathy with experimental feline immunodeficiency virus infection”. J Acquir Immune Defic Syndr. 6(7):758-71.
Oldestone MB et al. (Jul 1977). “Pathogenesis of the slow disease of the central nervous system associated with WM 1504 E virus. I. Relationship of strain susceptibility and replication to disease”. Am J Pathol. 88(1): 193–212.
Phillips TR et al. (1996). “Neurologic dysfunctions caused by a molecular clone of feline immunodeficiency virus, FIV”. J Neurovirol 2: 388-96.
Raymond LA et al. (Oct 1998). “Auditory brainstem responses in a Rhesus Macaque model of neuro-AIDS”. J Neurovirol. 4(5):512-20.
Poluektova L et al. (Dec 2005). “Macrophage-induced inflammation affects hippocampal plasticity and neuronal development in a murine model of HIV-1 encephalitis”. Glia. 52(4):344-53.
Ewert DL et al. (Feb 1990). “In ovo infection with the avian retrovirus RAV-1 leads to persistent infection of the central nervous system”. Lab Invest. 62(2):156-62.
Posted by: Natasa | April 08, 2011 at 04:51 PM
It's long been suspected that Kawasaki was retroviral in origin, the findings of reverse transcriptase in the 80's and 90's as presented in the literature, then the interesting labeling of a few vaccines with KD as a possible adverse consequence..however, the ball was dropped on this, nothing new can be found . Perhaps they know? I don't know if having a kawasaki kid and an asd kid is related in etiology, but it's interesting.
Posted by: barbaraj | April 08, 2011 at 04:15 PM
XMRV does not cause autism. The problems from, or with, XMRV, are themselves being cause by other things. All of the listed connections (inflammation, and so on) may very well allow XMRV to flourish, but XMRV is not the problem. Even if XMRV were not there -- and it is not, in quite a number of peopler -- the problems would still be there.
Two similar scenarios:
AIDS and Kaposi sarcoma. For those who don't know anything about this, look it up.
MS and Tysabri. A side effect, in some MS patients is PML -- progressive multifocal leukoencephalopathy.
The XMRV connection to autism is similar.
Posted by: notquitethereyet | April 08, 2011 at 03:44 PM
We have 9 year old identical twin boys who are vaccine injured and who have responded well to biomed intervention, but they are not recovered. We have seen the most significant improvements after healing the gut and supporting the immune system. We now have a 20 month old little boy who is not immunized...not even the Vitamin K shot at birth. He showed signs of regression when he was sick with the flu and even with the common cold. Two weeks after the cold/flu goes away, his regression begins to reverse itself and those things that he lost returns again. We were scratching our heads wondering how on earth he could be regressing when he is healthy as a horse (no GI problems no immunodeficiencies, etc.) and had been developing ahead of schedule. This XMRV may be the explanation. We now have an appointment with our DAN doc for our little one so that if XMRV is an issue, we can support his immune system even more.
Posted by: Bea Feldmann | April 08, 2011 at 03:35 PM
Thank you for writing and putting this together in a way that "I think I can understand".
It's interesting in that I had recently given this some consideration, not in depth, however just with a cursory glance, I was noting vaccine contamination, passing through of polio vaccine through mouse spines or such seven times, ,possible lab contamination of any vaccine,and then the one topic that hit home with me was a study of stroke following retroviral disease. Stoke has always been a huge consideration , in my way of thinking. My friend's seven month old died five days after his dpt, of Kawasaki followed by stroke. My daughter had Kawasaki after vaccine. No identifiable cause has ever been found for KD and yet it leaves the victim much in the state your research suggests, my daughter was diagnosed with fibromyalgia at age eleven!
She had lowered glutathion, and severe chemical sensitivity. The cardiologist at Hopkins suggested her immune issues have caused her to have chronic Epstein-Barre, yet that was an infection picked up around that same era, age 11. Her sed rate is high, suggesting chronic inflammation. Her KS diagnosis was at age 2.
http://jvi.asm.org/cgi/reprint/67/10/6015.pdf
Can I back off of thimerosal, or aluminum, no, because there is where I see the initial tearing apart of the immune system, the exponential influence on viral elements within the vaccine, and are the toxins that tore apart the blood brain barrier in infancy. I do believe thimerosal causes acquired mitochondrial dysfunction, and the rest play havoc out of opportunity.
Posted by: barbaraj | April 08, 2011 at 01:48 PM
I can't help feeling that the only way to combat the inevitable "negative" findings of NIH and CDC (because we all know that the only important test is the CYA test and that vaccines must be exonerated at all costs) will be for more enlightened foreign researchers to step in and do the work. Kent, is there any way to set up a widespread program of affordable testing for the autism community? Or is the sample handling issue too difficult? And has WPI undertaken to test vaccines for XMRV virus? I am reminded of Dr. Delwart et al, searching for potential blood supply contaminants, and their findings of viral contamination of vaccines published last year. They found lots of contaminants including pCV1&2 and HERV-K, using microarray analysis (Lawrence Livermore Labs) that I think he said cost only about $400/sample. They also found a lot of proteins/fragments that were UNidentified. I wonder if XMRV might be one of them?
Posted by: Garbo | April 08, 2011 at 01:42 PM
In 2009 the NIH interagency team led by Susan Swedo began looking for presence of XMRV in autism samples. They found that some were positive!! (no numbers given)
Those results were never published because "after some more extensive testing it turned out that the positive results were actually negative" – when I enquired about what "more extensive tests" meant (as tests are not standardised how can one test be considered "more extensive" over another test??!). I was given no answer to that but instead pointed to a study by CDC and colleagues, which found no virus in anyone (by a method that has never ever detected a positive and has since been removed from the market). The tests were carried out by same people at the CDC who found no evidence of MMR-contaminant retrovirus in autism samples 20 years ago - Switzer and Heinene from CDC lab.
In short the scientists in charge of autism-XMRV study at NIH have:
1. discarded their POSITIVE findings of XMRV in autism (has the CDC 'retested' told them they must be wrong??)
2. are now using a different test to look for presence of antibodies in new autism samples. They are, in the words of Mike Iadorola, who is running theNIH study lab tests, expecting “that we likely will corroborate their (CDC negative) study".
3. trying to find presence of antibodies to XMRV in autism samples even though the science is now clearly showing that XMRV has ability to stop the host producing ANY antibodies shortly after infection. In other words absence of evidence is not remotely evidence of absence in this case.
I have written to Iadorola and Swedo at NIH asking them if they will publish their original POSITIVE findings alongside their ‘expected‘ negative findings but have received no reply yet.
I have also many times tried to get them to clarify what "more extensive" testing meant, what type of methods were used for positive findings, and who carried out the negative tests and by what methodology. No reply!
Dr Mike Iadorola can be contacted on miadarola @ dir.nidcr.nih.gov
Susan Swedo swedos @ mail.nih.gov
(if writing to them it is worth copying in their boss francis.collins @ nih.gov)
Posted by: Natasa | April 08, 2011 at 12:28 PM
this is a hair-pulling article - meaning that when i read it i wanted to pull my hair out - because it lays out in a straight line why so many people are being infected. thanks for putting yourself on the line and writing such a succinct and heartfelt opener. all of the smoke and all of the blowers cannot hide behind their jargon and ignore the public outcry. the cdc has demonstrated they have lost pace with and lost the faith of the research and the clinical sides of medicine. when you start using a public health and research center to protect yourself it's inevitable that your butt will be exposed.
Posted by: shelley | April 08, 2011 at 11:09 AM
Thanks Kent
As a parent with ME/CFS and two autistic children I can't tell you how many CFS parents say they too have autistic children. I believe the 2 conditions are connected. XMRV should be explored as a possible link.
Posted by: Keith | April 08, 2011 at 10:35 AM
From the bottom of my heart, thank you so much, Kent, for another excellent article on XMRV. Thank you for bringing to light why it makes so much sense that XMRV could be the root cause of the autism epidemic. That's what many of us have realized too.
People, we have to wake up and explore this further. We cannot close our eyes and ignore the elephant in the room, and we all know that we cannot count on the CDC to help us find the truth there. Many are not thrilled by the idea that a pathogen like XMRV, born in the lab and transmitted through biological products, could be infecting millions and causing severe disease like autism. They'd rather shove it under the carpet and sit on it.
But People, we need to find out if XMRV is causative in autism, because if it is, we could stop the progression of this epidemic. Every minute, new children are diagnosed and new families are destroyed. This has to stop.
Posted by: Karin | April 08, 2011 at 09:03 AM
Thanks Kent!
Posted by: chris | April 08, 2011 at 08:50 AM
Kent,
There is no doubt in my mind that my illness (ME/CFS,Lyme) and my son's autism will be found to have the same cause. XMRV is a likely candidate and I also hope the autism community will begin to follow this important research. We are close to finding answers for all of us but I think we need to all work together to make sure this family of retrovirus' is studied properly and given appropriate funding to do so. I will continue to look for your excellent articles.
Thank you!
Posted by: Jill | April 08, 2011 at 08:50 AM
Thank you, Kent, for the clear presentation of this argument regarding XMRV and its possible role in autism. I hope everyone reading your article will click on the links to Dr. Bradstreet's blog, where you will witness a medical researcher "in media res" and also his race to unlock the secrets of this disease. Dr. Bradstreet's blog is must reading for those who want to understand more about the science of this disease.
Posted by: David Taylor | April 08, 2011 at 06:21 AM