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My Wife, My Daughter, and XMRV

Posted Sep 24 2010 12:00am

Retrovirus By Kent Heckenlively, Esq.

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.

What remains to be more clearly elucidated is the contribution of XMRV to chronic fatigue syndrome/ME, autism, and other neuro-immune disorders.

The Question of Chronic Fatigue Syndrome, XMRV, and Autism

The truly insidious thing about XMRV is that it’s a retrovirus.  It has two copies of an RNA genome that is reverse transcribed into DNA and inserted into the DNA of the host.  Thus it persists a lifetime in an infected individual and multiples itself whenever the cell divides (and only in a dividing cell).  The other two known human retroviruses include the HIV virus which causes AIDS and human T lymphotropic virus (HTLV) which causes adult T cell leukemia and a neuro-immune illness called HLTV-1 associated myleopathy, which if left untreated can leave patients wheel-chair bound.  XMRV is thus the third known human retrovirus family.

XMRV may be linked to autism as it has been shown to integrate preferentially at the start site of genes and in CpG islands.  This could explain a number of the methylation patterns changes seen in autism.  Also, retroviruses tend to affect mitochondrial function through the production of reactive oxygen and reactive nitrogen species, thus explaining what seems to be acquired mitochondrial defects in some children with autism.  The virus buds from the cellular membrane, disrupting the membrane fatty acids and cholesterol and supports the finding of some medical practitioners of a disruption in the cellular membrane of children with autism.

The published findings from the National Institute of Health, Harvard University, and the Food and Drug Administration however showed even higher levels of infection from MRVs in chronic fatigue syndrome sufferers than the original study from Dr. Mikovits, et al, as well as its prevalence in the general population. 

In the midst of her work with chronic fatigue patients Dr. Mikovits became aware that several of the children of these patients had autism.  Understanding that the virus could be passed down from mother to child Dr. Mikovits tested a small number of these children and found that 40% of these children tested positive.  In a statement from the Nevada Commission on Autism Spectrum Disorders, more testing is underway which “could dramatically increase that 40% positive finding.”

A poster presentation by the WPI was made at the 1st International Workshop on XMRV and entitled “Detection of Infectious XMRV in Peripheral Blood of Children” looked at a possible cross-over between parents with XMRV infection and chronic fatigue and whether their children may have the same infection and if so, the neuro-immune disorders from which they may suffer.                                                         

The background section stated, “XMRV is a new human retroviral infection of as yet unknown pathogenic potential.  Recent reports have found XMRV infection in 3% of healthy adult populations and high percentages in populations of immune compromised individuals and Chronic Fatigue Syndrome (CFS).  The presence of XMRV infection has not been explored in families with CFS or children.  An understanding of the XMRV infection rate in children may be particularly helpful given that 1 in 100 children in the US are diagnosed with neuroimmune disorders, including Autism Spectrum Disorders (ASD) and that CFS and childhood neuroimmune disorders share common clinical features including immune dysregulation, increased expression of pro-inflammatory cytokines and chemokines, and chronic active microbial infections.  Thus, we hypothesized that XMRV infection may be detected not only in families with CFS but also in children with other neuroimmune disorders.”

According to the methods section, “66 Subjects participated as family members of a parent or child diagnosed with a neuroimmune disorder.”  The testing was done with 37 parents and 29 children. 17 of the children were diagnosed with an autism spectrum disorder, a pair of three-year-old twins had Niemann Pick type C, a neurodegenerative disease, and 10 were healthy siblings.

In the results section of the poster they found, “PCR products of env and gag confirmed XMRV.  The age range of the infected children was 2-18.  17 of the children (including the identical twins) were positive for XMRV (58%) and 20 of the 37 parents (54%) were positive for XMRV.  14 of the 17 autistic children were positive for XMRV (82%).  Of the 17 families, only one had all members of the family test negative for XMRV.  In contrast, 16 of the families with neuroimmune disease, 9 families had at least 1 parent and child test positive for XMRV.  4 of the families had a parent test negative with a positive child, and 2 families had a parent test positive with the diseased child testing negative.”

What jumped out at me from the poster was that 14 out of 17 of the children with autism were positive for XMRV, an infection rate of 82%. 

That’s approaching the infection rate of people with chronic fatigue syndrome/ME.  Expression of a retrovirus like XMRV might also cause an immune deficiency similar to what’s seen in HIV/AIDS, rendering the immune system incapable of controlling infections like lyme disease, HHV-6, or CMV.

At a recent retroviral conference in San Francisco in February of this year there was a good deal of discussion from Emory University researchers about how XMRV is able to infect cells.  While it's known that XMRV can infect cells called fibroblasts in the prostate, the epithelial cells also expressed a large number of antigens suggesting they're similarly infected.  The epithelial cells are smooth muscle cells which line the interior of blood vessels, telling them to open up or constrict.  The researchers at the conference theorized these blood vessel infections might cause many of the brain and other abnormalities observed in chronic fatigue syndrome. 

Abnormalities in blood flow in the brains of children with autism have also been observed and discussed for many years.

The Way Forward

If anybody spends much time on a chronic fatigue/ME web-site (I’ve been lurking on the Phoenix Rising web-site for months and for a few weeks on the new XMRV Global Action site while also checking regularly at the blogs of Hillary Johnson and Mindy Kitei), you’d see a menu of therapeutic options ranging from B-12 shots, various diets, chelation, or even stem cells.  You’d almost think you’d wandered onto a bio-medical site for autism.  And just as in autism there are individuals who seem to have recovered from chronic fatigue syndrome/ME, but there are also many others who still linger in agony with the disease.  I have heard some chronic fatigue syndrome/ME sufferers describe it as a "living death."

When my wife received the news she was positive for the XMRV virus she asked what I thought it meant.  I recalled her stories of being a teenager with psoriasis (an autoimmune disorder) so bad she had to go to weekly UV treatments and often sleep wrapped in plastic wrap with a medicinal salve on her skin.  She rallied from that when she moved to California and her step-father put her on a vitamin regimen, but whatever was in her body didn’t leave her. 

In recent years she’s complained about changes in cognition and mood swings.  My wife is a speech therapist who’s worked for 20 years in the rehabilitation unit of a hospital.  She often tells me, “I treat people with brain injuries and I know I’m not too far from them.  I compensate for the problems, but they’re still there.”  Add to that some recent instances where what should have been minor injuries took more than a year to heal, and it doesn’t take much thought to come to the conclusion that something’s wrong.  My wife doesn’t have chronic fatigue syndrome/ME, but an examination of her would probably reveal sub-clinical indications of the disorder.

I told her that we might have an answer to her problem and maybe that of many children with autism.  And I’m convinced that knowing what you’re fighting is half the battle.  Both those who suffer from chronic fatigue syndrome/ME and the parents of children with autism have long hoped for objective biological markers of what has gone wrong in the body with these conditions.

Scientific American recently reported on a study from the University of Utah and Emory University in which 28 previously approved drugs for HIV were used on XMRV cultures for effectiveness.  HERE  

According to the study, four of the medications (raltegravir, L-000870812, Zidovudine (AZT) and tenofivir disoproxil fumarate) were best at stopping XMRV replication.  In commenting on these studies Dr. Raymond Schinazi, a professor of pediatrics and chemistry at Emory University’s Center for AIDS research said, “These drugs inhibited XMRV at lower concentrations when two of them were used together, suggesting that highly potent ‘cocktail’ therapies might inhibit the virus from replicating and spreading.” 

There are other medications which have been reported to have a therapeutic effect, such as Ampligen, an immune system modulator, but all of this is still in its infancy.  In addition to medications which are currently on the shelf there’s the prospect of medications specifically designed to go after these viruses.  All in all, I think something truly wonderful is being born.

There are many caveats to be certain.  Like the chronic fatigue syndrome/ME community, the autism community has long waited for answers.  I know that our community wants to find the quickest path to safe and effective treatments for our children. 

Wouldn’t it be ironic if the warrior mothers of autism found that in helping their children they were also helping themselves?

We will wait for further answers.

(Author's note - Late yesterday we received word that my mother-in-law (my wife's mother) has also tested positive for XMRV.  She was one of the first 1,000 people in the country diagnosed with celiac sprue disease, an inability to digest gluten.)

Kent Heckenlively is Legal Editor of Age of Autism

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