My Wife, My Daughter, and XMRV
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
See this link for full presentation:
Portions of it say:
"We analysed the data of 1210 consecutive patients complaining of chronic fatigue . . . "
- and -
"752 patients fulfilled the CDC criteria for CFS (Fuduka, 1994). Of those CFS patients, 34 (4.5%) have a common factor in their past medical history that immediately preceded the onset of their CFS. These patients had received a blood transfusion a few days to a week prior to developing a flu-like syndrome that later proved to be the acute onset of their CFS."
In the U.S. and perhaps all around the world, the powers-that-be need to assure people that 'the blood supply is safe.'
Of course there will be lots of studies demonstrating no XMRV. But no studies looking for anything else.
LOTS of money and lots of people's jobs are at stake -- there will be independent (no conspiracy, just many people with a similar stake) efforts to show that 'the blood supply is safe.'
All evidence to the contrary . . .
Posted by: AuDehorsDeCombat | October 04, 2011 at 01:50 AM
Thanks for covering MLVs in ME and autism- a very important topic. I am a lawyer with ME and this is my first visit to an autism site. I wanted to take a look and see what the autism community was saying about XMRV. I am impressed with your very accurate reporting on the subject- although i am duty bound to nag you that the disease is called ME; by slipping and sometimes calling it 'chronic fatigue' you are falling in the trap set for you by the charlatans at CDC. CDC, NIH, a cadre of charlatan UK psychiatrists and the UK govt have waged a quarter-century war on ME science and patients. Their latest attack is CDC's fraudulent study which failed to find MLVs in a hodgepodge of fatigued and depressed people that they lied and claimed had "CFS" (ME). As WPI is doing the best science on ME today, they are under full attack by these charlatans. I would like to ask the autism community to please support WPI as much as you can. WPI is unable to take on most of the worthy scientific and clinical projects it has planned because they are under heavy fire from these frauds. The ME community has rallied to their side, but we are in tatters and impoverished because of the aforementioned persecution.
Again, I am asking the autism community to please support WPI whatever way it can, including financially. If we don't all band together, the retroviral science that could potentially benefit many devastating neuro-immune diseases including autism and ME will be crushed, just as CDC, NIH, etc. have succeeded in halting study of other retroviruses in ME in the past including the DeFreitas retrovirus in 1991. The DeFreitas RV, very closely related to HTLV, was the subject of the Primetime Live piece referred to by NicoleW in her comment. The video is very entertaining and accurate: vimeo.com/13048135.
There are many similarities and connections between ME and autism, which would take forever to get into, but I will note Dr. Garth Nicholson's excellent studies showing that Gulf War Illness (a form of ME) is very highly associated with certain military vaccinations (even among those never deployed to the Gulf) and also with the children of pwGWI developing autism and ME. He suggests that there is a viral infection conveyed by the vaccines which cause ME in older children and adults, while causing autism in younger children.
I can go on and on, as you've noticed, but I'll stop here. Anyone is welcome to contact me- I post on phoenixrising (aboutmecfs.org) as justinreilly. good luck with regaining your or your childrens health, everybody!
Posted by: Justin Reilly, esq. | January 31, 2011 at 06:38 AM
Do you think this virus mentioned in this 1996 Primetime video is the same or related?
I found this 1996 Primetime video very interesting http://vimeo.com/13048135
Posted by: NicoleW | December 30, 2010 at 01:19 PM
I have tested positive for XMRV as has my son, Blake. Our cognitive decline was attributed to the Viruses HHV-6A and EBV. We have had nearly full restoral with antiviral therapy. Best wished to you, your wife and family. Julia Rachel, http://vlgonvalcyte.wordpress.com/
Posted by: Julia Rachel | November 28, 2010 at 06:15 PM
For reliable research, in the absence of a definitive marker for ME/CFS, the best selective Criteria needs to be adopted.
One eminent DNA specialist in UK stated that less that half the patients refered to him as suitable candidates, when his team had spent two/three days on in-hospital testing to eliminate other Fatigue conditions.
Maybe some of the XMRV testing has used difvferent criteria?
We at Resume CFS, a small recently formed charity in England, beleive that the Canadian criteraia are the tightest. We are also working to comlie a Disease Register of PWME who meet the Camnadian criteria , many of whom have severe ME.
It would be helpful if all the labs doing work on XMRV (and similar MRVs) would quote what selection criteria they had used.
Posted by: Alistair McLachlan | November 23, 2010 at 01:48 PM
Kent, I am sorry, I think you misunderstood me, I was asking about if you had your blood tested.
Posted by: Jen | September 28, 2010 at 12:01 PM
to [email protected] how does one test for this?
At the moment the only commercial labs offering the test are VIPdx (in US) and Redlabs (in Europe. See my post below for links.
Posted by: Natasa | September 28, 2010 at 05:13 AM
How does one get tested for the virus?
Posted by: Sben | September 26, 2010 at 11:37 PM
Kent I do appreciate you discussing it though. No time for privacy when you are saving the world.
It is my husband that has the acquired mitochondria disorder.
It was my husband whose mother had hypothyroidsim at a young age of 45 - I might add along with all her three sisters (thyroid trouble). Three have all died rather early in life, with Alziheimers and stiff hearts. All three lived in California and I often wonder what vaccine was available for California's in the 30's?
It was also my husband's father from Peekskill, New York that complained constantly with his stomach and his back (degenerative disc disease - also another so called autoimmune disorder)
I am the energetic one - never been to the doctor. I saw my doctor one year when I hurt my eye on the tip of a Yucca plant I was weeding around. I had not been there for 15 years. They wanted to know where else I had been going for medical treatment all that time.
Then at age 45 I started having severe headaces. (I thought it was stress finally getting to me with two sick kids and a husband that worked hard on his career job but stopped doing anything at home, or our farm) and then I found out I tooooo have--- have a thyroid condition. The first in my family - ever????
But then my mother and her four siblings have stomach problems, and nervousness pretty bad too. They all walked through the mud and cold to see a local nurse in the thirties to get whooping cough vaccines. My mother said she already had the whooping cough at the very time she was receiving the vaccine. My mother when she was 30 something years old, after I was born had a flu shot. Which she complained about every since I can remember. She said she was never better afterwards. She would break out in a fever all that year, even in the summer time. She had a nervous breakdown a little after that too, along with stomach problems that ended her up in the hospital, and yet nothing could be found and nothing was done to help.
So it is going to be very interesting to see how this XMRV virus plays out. It may turn out that it is a numbers game. Just how much of a viral load each parent has.
Posted by: Benedetta | September 26, 2010 at 09:24 AM
Calling CFS/ME "chronic fatigue" is incorrect and insulting. One is a common symptom, the other an infectious neurological illness which can be progressive and even fatal.
Posted by: Maija Haavisto | September 26, 2010 at 05:57 AM
You ask if I've considered the possibility that my sperm may be infected with XMRV. In response I can only lament, have I no shred of privacy left in my life? Haven't I given enough to the cause?
Actually, I am scheduled to be tested (by blood, not that other sticky substance) as there may also be XMRV infection on my side of the family. My maternal grandfather died from an aggressive form of prostate cancer, and my father has had unexplained stomach pain for more than forty years as well as some social anxiety issues. I'm just such a chipper, energetic guy I've generally thought that I don't have the virus, or if I do, it's not active.
I hope I've answered your question, and that it's the last time I discuss such matters in a public forum.
All the best,
Posted by: Kent Heckenlively | September 26, 2010 at 02:17 AM
Hey Kent, with your wife and daughter testing positive for XMRV, have you been tested? It looks like from a recent abstract from the XMRV workshop that XMRV can become endogenous in sperm... Thank you for reporting on XMRV accurately and in a timely manner.
Posted by: Jen | September 26, 2010 at 12:12 AM
Tiring to think that it makes such sense, has likely be researched and the truth is hidden for the benefit of greed.
I forgot what patron called them 'ervs?
My understanding is that all mammals have retroviruses that are species separate , non communicable. What happens when, you don't think they will create a problem across species, as likely happened with HIV and polio/hep vaccines, you blindly dismiss them as harmless, then the oops comes and decades later someone decides to test for them and gives us the "all clear". Too convenient.
Mercury enters the body, likely suppressing a number of immune system functions, a "harmless virus enters", added to the harmless virus is an adjuvant by design that will take viruses to the max in the human body, and what a sci fi nightmare is created. Three ingredients that stand alone could have problems but together they became a synergistic disaster!
Posted by: barbaraj | September 25, 2010 at 05:52 PM
Sue - The quote I posted was from a 2006 lecture by Dr De Meirleir - see here
There is this published on mercury, but I don't think it's the exact reference.
Dr De Meirleir has noticed that many of his CFS patients have autistic children.
The possibility that what causes ME/CFS in adults, may also cause autism in fetus/children makes me so angry when I think that if CFS had been taken seriously in the 1980s, we may not have had 20 years of children becoming autistic unnecessarily.
Posted by: B | September 25, 2010 at 01:29 PM
Kent: Thank you so much for your donation of $250. Because we have a generous donor who is matching donations, your $250 has been turned into $500! And you have brought us that much closer to getting our major AD in the Washington Post.
Once we get that 1/2 page hard-hitting AD in the Post there are going to be many questions by the journalists, researchers, senior policy makers, and the public about all that has gone on with these diseases, and the research that was started in the mid 1980's and damaged and then no further funding until WPI/CC/NCI stepped in just a few years ago. The Team expects that this AD will grab attention and get the funding for more research on this newly discovered family of Retroviruses, including XMRV.
Also, when the public finds out that this family of retroviruses has been in the natio's blood supply for more than 30 years, the screaming will be deafening. Why did the CDC/NIH kill off research on a Retrovirus while the numbers of sick with ME/CFS and Autism JUMPED during that time? WHY?
Anyway, thank you so much for your donation. We are getting there and when this Post AD comes out there is going to be an explosion that hits the Federal agencies with any involvement in health care/research.
www.causes.com/causes/511536 - To read, join, donate, and provide input/ideas for the 4 ADS that will presented to our members for examination and comments.
Posted by: sharon | September 25, 2010 at 11:13 AM
I have donated $250 towards placing an ad in the Washington Post requesting more federal funding into the research, clinical trials, and treatment of neuro-endocrine-immune diseases. I encourage all like-minded people to do the same at the address you gave me.
To my wonderful readers, I always love tackling such a difficult topic because when your comments come back I always learn more. I didn't know that about the RNase L fragments making cells much more vulnerable to mercury damage. I've always believed that at some point all of our various observations will combine to form a unified mosaic.
All the best,
Posted by: Kent Heckenlively | September 25, 2010 at 10:26 AM
B--you posted some interesting info regarding how this "retrovirus" might increase mercury toxicity. Can you provide a reference with more info? I am interested to read more.
I would also like to point out that mercury exposure clearly alters immune function and could very well increase an exposed person's vulnerability to viruses, or increase expression of innate "retroviruses." In which case there is a chicken and egg question of which came first.
(See http://www.ehjournal.net/content/7/1/52 and http://www.jimmunol.org/cgi/content/meeting_abstract/178/MeetingAbstracts/S150-a for a bit of info regarding mercury effects on immune function--there is lots more info out there.)
One might ask, is the best response to "kill the virus" or to remove the toxin that messes up the immune system's ability to handle or suppress it?
Posted by: Sue | September 25, 2010 at 10:13 AM
Here is the CDC study:
Posted by: Janet Sheehan | September 25, 2010 at 08:17 AM
heard XMRV originated in mouse, but I am going to guess it's contamination of the eggs/MMR production with ALV (Avian Leukosis Virus) which according to one PubMed study, affected ALL samples of vaccine tested...although the CDC claims there is "no evidence of transmission."
Posted by: Janet Sheehan | September 25, 2010 at 08:14 AM
Kent, an articulate and amazing article. Hard to say there is no factor between XMRV, CFS and Autism when so many in one family have manifestations of illness.
I would hope you will join us at ME/CFS Worldwide Patient Alliance:
We are placing an Ad in the Washington Post demanding answers, funding, clinical trial, and a better quality of life for all these NeuroEndocrineImmune Diseases (NEIDs).
We need your voice and all those with children with Autism! Together we will be formidable.
Many blessings on you and yours...meaning all the Autism family we so identify with (we with ME/CFS, FM, Lyme, Atypical MS).
Posted by: kathryn | September 25, 2010 at 06:12 AM
Sue - you asked whether there was a connection between this retrovirus and mercury. Read this.
This retrovirus, XMRV, was first found in prostate cancer patients. These cancer patients had a defect in the RNase-L antiviral pathway.
CFS patients were known to also have a defect in the RNase-L pathway. So they decided to check CFS patients for XMRV. And they found it.
Here is a quote from Dr De Meirleir about fragmented RNase-L in CFS patients.
"One of the RNase L fragments has a structure that is almost identical to a protein involved in the removal of heavy metals and toxic chemical from cells. When this protein is blocked by the RNase L fragments, the cells become more sensitive to mercury. Now a tiny amount of mercury that would normally kill 10% of the cells can kill 50 to 100% of the cells."
Repeat, "Now a tiny amount of mercury that would normally kill 10% of the cells can kill 50 to 100% of the cells."
Posted by: B | September 25, 2010 at 05:32 AM
Fantastic article! To the comments re vaccines... I'll copy an excerpt from my blog :
According to Dr. Judy Mikovitz, Whittemore Peterson Institute Director of Research, XMRV can lie dormant in people for years. It is only ignited through other factors such as stress hormones like cortisol, or in response to the presence of inflammation, or the introduction of infection or viruses that kick your immune system into overdrive. But what's key in this discussion, is that XMRV is passed from parent to child.
"If I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."
We have so much more to learn. Hopefully we'll hear more at the CFSAC meeting in DC Oct 12-14, as follow up to the recent XMRV workshop... Here's hoping!
Posted by: Lannie | September 25, 2010 at 01:17 AM
"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"
I am sorry, but what was the answer to that question? Is it new?
I have read your article but I didn't understand?
For Sue, and Jen love you both and you have plenty to say that I want to hear!
Posted by: Benedetta | September 25, 2010 at 12:46 AM
One of the earliest doctors to take chronic fatigue syndrome/ME seriously, Dr. Cheney, is reporting that he is finding that lyme cannot exist with XMRV being present. This remains to be proven. My guess is that XMRV will not be difficult to treat, as there are many promising medications. This also remains to be proven.
Texas Dad - Thanks for keeping the faith, Brother!
All the best,
Posted by: Kent Heckenlively | September 24, 2010 at 11:56 PM
Yes, at least one research lab looked for XMRV and other viral contaminants in vaccines using viral genetic microarrays. They didn't find XMRV. (Go look for Joe DeRisi's talk on TED.com to learn about microarrays and the virochip.)
However, I don't think they had the opportunity to look in samples of old vaccines. As far as I know, we don't keep 'archival' samples of past vaccines, which is unfortunate.
Posted by: TexasDad | September 24, 2010 at 11:51 PM
Thank you, Kent! Great article! It's nice to be able to come in from the cold.
Posted by: TexasDad | September 24, 2010 at 11:29 PM
is xmrv tough to treat like lyme disease is?
Posted by: Paul | September 24, 2010 at 10:39 PM
My guess is that they will NEVER test vaccines for this virus. Why would they? They can't get the metals out they were supposed to, and they can't stop contamination from animal bits!
Why should they? This is a goldmine! Shoot it into everyone - each year with the flu shot - and then get everyone on viral meds to deal with chronic illness.
Test vaccines for this (or even safety)???
What an optimist.
It's the money, honey.
Posted by: Lisa | September 24, 2010 at 10:34 PM
I hope that this discovery results in finding helpful treatments for your family! Good for you for continually seeking answers. We will be so interested in what comes of this. All the very best to you and yours.
Posted by: Twyla | September 24, 2010 at 10:27 PM
Thanks for this really well-done article. I have ME/CFS, and two children with ASD. I suspected a connection between the two conditions before I ever knew a retrovirus might be the common factor. This is tremendously encouraging news for both groups of patients!
Posted by: Kim | September 24, 2010 at 09:03 PM
polliwog asked: ". . . [A]re they testing vaccines for [XMRV]?"
Good question. Another good question might be this: What XMRV-contaminated vaccines could possibly be responsible for the increase in ASD prevalence since the late 1980s?
Posted by: curious | September 24, 2010 at 08:38 PM
Thank you for this article, however deeply disconcerting and thought provoking. Quick question for you or anyone else who'd like to chime in... If you tested positive twice for HTLV-1 and now you have two children diagnosed with Autism, hypotonia, SPD, global dev delay, food intolerance and allergy, immuno compromised, would you have them tested for HTLV or XMRV based on this current research published?? Would you yourself get re-tested for HTLV and/or XMRV again?
Posted by: Jennifer Brook | September 24, 2010 at 07:33 PM
To Jen (who isn't going to read any replies) and whomever else may share her sentiments regarding my earlier comments on this article:
I am sorry if my post offended you somehow. My intent was only to express skepticism and caution. I will be the first to admit that I could be wrong. I happen to have a friend who suffered from CFS for years and I do understand how life-destroying this condition can be. I do not think that I, in any way, made light of CFS, or autism, though apparently that is how Jen somehow took my words.
I remain very skeptical that a retroviral infection explains CFS or autism, though I don't entirely rule out some connection. I am far more convinced at this point that there is a mercury connection to both CFS and autism--from all that I have read, observed, and experienced firsthand. There are CFS sufferers who say that diet and mercury detox did restore their health--I accept their stories at face value.
Perhaps there is some connection between mercury and this "retrovirus" -- that seems possible to me. So I sincerely hope that those involved in doing and supporting XMRV research, if they are truly independent, will not ignore or disregard that possibility, and instead will investigate it carefully.
Furthermore, while better diet might not cure any, certainly not every, case of AIDS or CFS or autism, I suspect that more careful attention to diet wouldn't make a sufferer any worse, and could likely help. I don't think anyone could say the same about many pharmaceutical treatments for these or many other diseases.
Detox may be more similar to pharmaceutical treatments--some methods of approaching it may indeed be more harmful than helpful. I think much more research needs to be done to figure out the best ways of measuring toxicity in a living person, and developing effective methods for detoxing various poisons--not just mercury, but also aluminum, lead, manganese, tungsten, uranium, as well as the thousands of manmade toxins like BPA, dioxin, pesticides etc.
Right now, there seem to be as many ideas of how to do this as there are poisons--so it can be quite difficult to ascertain what is the best way to approach detox, or even to determine when it is appropriate. More genuine research on how to measure and clear out toxins could be very valuable to us all.
If there is synergy between microbes and toxins (and much evidence suggests there often is), then approaching the problem from the angle of getting rid of the synergistic toxin(s) seems just as likely, if not more likely, to be effective as attacking the microbe(s) -- which always have the potential to evolve.
Of course, reducing human exposures to toxins by cleaning up our environment or changing the ways we do things (like the way we preserve vaccines or generate energy or dispose of waste) never seem to be actions that garner the support of big business or folks who benefit from, or just like, the way things are. I don't think it is impossible to generate big profits from alternate, less toxic, safer and more sustainable methods of doing things--but it does require people be willing to consider new ideas and possibly doing lots of things differently.
My sincere hope is that answers are found, wherever they exist. I do think I am entitled to express my opinion, and my skepticism about this XMRV hypothesis, without someone lashing out. Such behavior is reminiscent of Orac and company's responses to those who question vaccine safety and efficacy. I do wonder what makes anyone feel so invested in this new retrovirus disease model that they feel defensive and a need to attack anyone who questions it.
Sincerely hoping that answers for all are found somewhere, soon.
Posted by: Sue | September 24, 2010 at 07:33 PM
Kent: Great research and report! There is no doubt that immune dysfunction is at the heart of autism and other chronic diagnoses. I take all the same things and do the diets my children do in order to stay on my feet. My children are recovered only as long as they stay on treatments, and me as well. So, yes, whatever caused their autism, caused me to be sick. We also have chronic tick-borne infections, strep, yeast, mercury, and all that jazz the autism arena talks about. I am thinking there is no smoking gun, but rather a lot of smoking guns. In the end, we need better trained docs, and better governing agencies at looking at all these chronic infections, toxins, electrosmog, etc. If I have one request, it's please hurry up and get the docs trained because I am so sick of hearing people comment that autism is not treatable, etc. But, also, I have a report that says I have HTLV-1. So, why isn't it also getting attention? I am thinking HTLV-1 is just as guilty as XMRV and other pathogens.
Posted by: Heidi N | September 24, 2010 at 06:19 PM
I think NIDS considers this
"http://nids.net/" Dr Goldberg
Posted by: Dan | September 24, 2010 at 05:47 PM
my DAN just ran some 'slightly outside the box" labs to try to figure out why he is SO lethargic. His results came back suggestive of a Long Chain Fatty Acid defect. We've now got to re-run these tests off EFA's and Carnitine and test thoroughly for Mito. Could XMRV be causing my son's fatty acid oxidation issue?
Posted by: Alison MacNeil | September 24, 2010 at 05:12 PM
Sue - "IMO, IMPACT FACTORS are NOT A VERY GOOD MEASURE OF THE QUALITY OF SCIENCE"
I completely agree! You could liken impact factors to equating the number of ghost-written academic medical publications and sinecure to quality of science. Most of the prestige of the mainstream medical journals is undeserved and ill-gotten.
Posted by: patrons99 | September 24, 2010 at 03:39 PM
KDM - "how do we know XMRV is not a co-morbid issue of immune compromise individuals?"
Good point! The association of XMRV with autism and CFS may just represent comorbidity from an environmental toxin or toxins. It's premature to assume a causal relationship. Furthermore, even a SUFFICIENT cause of autism and/or CFS, is NOT necessarily a NECESSARY cause of autism and/or CFS.
A lifelong course of antiretroviral therapy is NOT a picnic. I have compassion for HIV positive and XMRV positive patients. I just think we might better look carefully, before we leap.
Posted by: patrons99 | September 24, 2010 at 02:32 PM
barbaraj - VERY INTERESTING link on GWS in Veterans Today! Thank you.
"immune system activation of coagulation"
Could this, at least in part, be related to the effect of the vaccinations, e.g. Anthrax vaccine, on the zeta potential of flowing blood. Lowering the zeta potential induces a hypercoagulable, prothrombotic state.
Could this be related to aluminum, either in the vaccines, or from dietary or other environmental sources, e.g. deodorants and antacids? Polycations, e.g. aluminum (3+), result in a dramatic lowering of the zeta potential.
Gardasil has aluminum adjuvants. There have been blood clotting events reported in Gardasil victims.
Posted by: patrons99 | September 24, 2010 at 12:54 PM
I agree with AF.. are they testing vaccines for the virus. It was after my MMR that I started having health trouble. I had it in my 30s and it took me out for a long while, although the doctors denied that. I had absent seizures, visual stims, dizzy spells... etc. They started testing me for MS after that... neg for MS... In the end I was diagnosed with PMS and was told to stay off caffiene, withhold sugar, and take vitamin B... I got better but I have never recovered. I'm now 47.
Posted by: polliwog | September 24, 2010 at 12:40 PM
how do we know XMRV is not a co-morbid issue of immune compromise individuals?
Posted by: KDM | September 24, 2010 at 12:32 PM
So it seems some may "inherit" the disease, and others will get it from contaminated vaccines. This shouldn't come as a surprise given the larger ,more identifiable pathogens, that get through these vaccine cell lines.
This is possibly then the "underlying" mitochodrial dysfunction in some, and the induced mitochondrial dysfunction in others.
This then is the trigger for further damage by chemical neurotoxins?
I was reading this today, somehow it may fit in.
Posted by: barbaraj | September 24, 2010 at 12:27 PM
I watched my family again and again react to vaccines. I was slow to figure it out - to the point that it has damaged my self esteem. Anytime I do anything that might be clever, or smart I cannot feel good about it because of the little voice in the back of my head that says "Stop it and be humbled by your stupidy about vaccines.
And then the disbelief I had to face with all the medical doctors over 30 years worth. Not only disbelief but the total lack of curiosity.
Will anyone pay for the slowness of this????
Will anyone lose thier job at the CDC for just ignoring a virus spreading in the population? Please tell me that somebody is going to pay?
My daughter seem to get better, waxing and waning so to speak--I thought she was better, just before I was floored with her operating on her own self in a psychosis state. AND drugs the wrong drugs did play a part in it - as well as more vaccines that brought her crashing down.
-but the research did not come from the usless, and most hated CDC. As a matter of fact they could not even repeat the research on it that was presented to them!
The heavy lifting of this research came not from the federal government but from people like us. Yes, like ussssss --- people being made fun of, ignored by the medical establishment. These people went intom themselves like the autism commmunity!
So it is not big pharma (insert your bad word for them) they have given us contaminated vaccines and then walked away-- yes walked away with out a creative idea in all their multi millionaire, big shot, over inflated egotistical scientific brains.
So when you say you are not buying it,just think it is not coming from big pharma it is coming from the other end.
Now a cure -- well there we are we have to give money to the very people that gave us this problem to begin with.
But hey - I was doing it anyway with the anti- seizure medications I am giving my son, and now my daughter.
We are not going to receive any justice in any of this. At lass that is that way it is.
But maybe, just maybe are loved ones will at least feel better.
Posted by: Benedetta | September 24, 2010 at 12:15 PM
And is this correct, back to 1978?
Kozak, C. et al.
Genetic mapping of xenotropic leukemia virus-inducing loci in two mouse strains.
In genetic studies of C57BL/10 and BALB/c mice, inducibility of xenotropic murine leukemia virus from tissue cultures by treatment with 5-iododeoxyuridine shows single gene segregation ratios. In both strains, the virus-inducing loci are on chromosome 1, linked to the Dip-1/isozyme locus, but the two may not be at allelic sites.
Genetic mapping of xenotropic leukemia virus-inducing loci in two mouse strains. Kozak, C., Rowe, W.P. Science (1978)
Posted by: Wondering | September 24, 2010 at 11:24 AM
When you say a new retrovirus, how new is new as here it is (plural) in 2002:
"PHO1 shows highest homology with the Rcm1 mammalian receptor for xenotropic murine leukemia retroviruses"
Posted by: Wondering | September 24, 2010 at 11:15 AM
re:How certain are we that XMRV is not an HERV
answer: Certain. It has been checked.
Posted by: Natasa | September 24, 2010 at 11:07 AM
I assume XMR V transfers like HI V.
Was it 2 kids that did not get the virus from their parents? Does that mean they were infected by injection?
Here it is:
"4 of the families had a parent test negative with a positive child,..."
Posted by: patrick | September 24, 2010 at 11:02 AM
Here's a naive question from a non-virologist:
How certain are we that XMRV is not an HERV related to hypomethylated DNA?
Posted by: patrons99 | September 24, 2010 at 10:58 AM
Uhhh....Mary....this "dodgy crap" as you describe it, just might lead to a cause, treatment and prevention for autism and other neuroimmune disease. Also, "an apple a day" is not going to cut it if you have a retrovirus.
Posted by: Jill | September 24, 2010 at 10:50 AM
Excellent Post Kent! I'm pretty sure that XMRV is probably one of the culprits for generational predisposition for my son's regression. I haven't been tested nor has my son but I've been watching this unfold closely. Keep us updated this!! Thank you!
Posted by: allison | September 24, 2010 at 10:43 AM
How does one test for this virus.... They ran titers on me last year.. Would they have tested for it then? Or is it a specific test.
Posted by: polliwog | September 24, 2010 at 10:23 AM
I have been thinking on this a great deal too!
There are certain areas that have a larger population of autism than others might indicate that years ago like in the depression their mother might have walked several miles to get a whooping cough vaccine that was contaminated?
Or a flu shot of years ago was contaminated?
Or Maybe the whole family gets shots over the generations with some contaminated vaccines and it builds up.
Think Gulf War syndrome: Healthy men going to war, passing strenous exercise test and yet a large number becomes sicken after the vaccines.
Posted by: Benedetta | September 24, 2010 at 10:16 AM
Dodgy and unreal that you are spreading this crap.
Posted by: Mary | September 24, 2010 at 10:16 AM
Sue and Patrons99, with all due respect, there is not one discovered human retrovirus that has been found to not be extremely dangerous to it's host. That being said, would you tell an HIV patient to detox and change their diet alone? That is utterly ridiculous, ignorant, and injurious at best! If you do not deal with XMRV, who knows the long term implications? I have many friends with ME who did all of that stuff, diet, detox, chelation. They are still so sick, they cannot even live a normal life. When they attempt to even do something out of the ordinary for the day (like shopping using a wheelchair), they have a "crash" for a week after. Maybe longer. Some people eventually can develop cancer from this retrovirus. They are some of the sickest people I have ever known, and they stay very very sick for a long time.
Patron and Sue, your sentiments add to the prejudice and trivialization of this disease, which has left our children without real medical help for almost 20 years, and CFS/ME patients told all they need is "Cognitive-Behavioral" therapy. You should be ashamed of yourselves and think about the fact that you don't know everything there is to be known. Please do not bother replying because I will NOT be checking back to read your bs responses.
Posted by: Jen | September 24, 2010 at 10:03 AM
Whittemore Peterson Institute for Neuro-Immune Disease
The Whittemore Peterson Institute for neuroimmune disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are ...
These are the people that discovered the link between XMRV (Retroviruses) and ME/CFS. They also believe that the Retroviruses play into Austism.
Also, for XMRV/Retrovirus testing see: VIP Dx
The Internet home for VIP Dx is committed to advancing research into the origin and cause of auto immune diseases like Chronic Fatigue ...-->>THIS company uses the technology developed by the WPI for XMRV/Retrovirus testing as well as other testing.> WE are working to get enough donations ($8,500 for 1/2 page AD in the Washington Post calling for far more research money for investigations and real clinical trials on the medications already out there for ME/CFS/FM and other diseases. WE all need medications and treatment NOW - not 30 years from now.
Help US. Be part of your cure. We can not allow the next generations to live with these diseases - there is no reason for this when we know that the Retroviruses are OUT THERE, in the blood supplies, and medications for anti-virals and immune enhancers are already out there - and that's why we need to PUSH Washington to get us clinical trials NOW.
Posted by: Sharon | September 24, 2010 at 09:54 AM
Testing for XMRV is offered by this lab: http://www.vipdx.com/ (doctors request required)
if in Europe it is through Redlabs http://redlabs.com/red-labs/our-tests/xmrv-testing.php
Posted by: Natasa | September 24, 2010 at 09:44 AM
Hit the link for the Facebook Causes page for: ME/CFS Worldwide Patient Alliance (MCWPA.
To create a patient-driven effective advertisement campaign on ME / CFS, and XMRV.
The researchers DO believe that the newly discovered family of Retroviruses may well cause or be part of a cause for Autism, MS, cancers, and possibly other diseases, in addition to ME/CFS (Chronic Fatigue Syndrome - misleading name for no body energy/damaged brain).
WE all need to fight to get more funding for this critical Retrovirus research to see if indeed it plays into our diseases and many other diseases and cancers. The ME/CFS sick have terribly higher numbers of those with leukemias/lymphomas than the "normal" population. We also have higher rates of heart disease and die on average about 25 years earlier than the rest of the population.
Please hit the link, read, join and donate if possible. Also, we need ideas and input for our 1/2 page AD in the Washington Post. This AD will be hard-hitting and demand more funding for research.
Are you all aware that a Retrovirus was found by Drs. DeFreitas, Cheney and Bell bacck in the mid-1980's but the CDC damaged the replication research and then the NIH killed off all funding for anymore research on this line of Retroviruses? That was almost 30 years ago. Had the NIH/CDC and other Federal health orgs continued to do Retrovirus research we all may not be sick with ME/CFS, MS, Autism, and possibly other terrible diseases and cancers.
So NOW is the time to fight for more research. NOW.
Hit the link above and help find a cure for yourself, your family members and millions of other people with other diseases/cancers. Thanks!
The "ME/CFS Worldwide Patient Alliance" Team.
Posted by: Sharon | September 24, 2010 at 09:40 AM
So then, potential treatment aside for just a moment, a few further questions:
1. Can the technology used to find the porcine virus in the diarrhea vaccines be used to analyze vaccines for the presence of XMRV.
2. Can the technology be used to detect HIV family retroviruses in the polio vaccine? (Wasn't there an article Jake Crosby did a while back questioning a radio interview of the polio reseacher who said he thought their lab/research may have been responsible for HIV transfer to humans, from the monkeys used? I may be remembering wrong . . .)
3. Can mercury change the way the body deals with retroviruses, making certain people succumb to the effects of the retrovirus while leaving others less affected. (I say less affected because I think, like Kent says about his wife, there could be subclinical changes we are not yet aware of that could really be part of the picture.)
4. In the XMRV famly research, were the parents who tested positive for XMRV and has XMRV positive children or ASD diagnosed children more likely to be the mothers or the fathers? (I ask this only from a "knowlege is power" standpoint, not a blame the mother thing.)
5. Is there vaccination history of the XMRV positive parents.
Posted by: Jenny | September 24, 2010 at 09:38 AM
Thank You Kent!
Posted by: Anonymous | September 24, 2010 at 09:31 AM
How does one test for XMRV?
Posted by: Anne | September 24, 2010 at 09:29 AM
We are starting to report preliminary results from the ongoing XMRV Positive Survey that 59 members of the Phoenix Rising forums created earlier this year to answer the question: What do people with XMRV (and related human gamma retroviruses) have in common?
The survey is open to anyone who has tested positive for XMRV or related MLVs, is completely anonymous, and can be filled out on behalf of children under 18 or those who are unable to complete it on their own.
Posted by: Kim | September 24, 2010 at 09:22 AM
I agree with patrons99. The route to health is better diet and detox, not more pharmaceuticals.
My daughter had severe psoriasis--I was at wits end to help her--the doctors had little except steroid creams that seemed to do little. After finding a paper by a dermatologist (Paul Dantzig) who linked psoriasis to mercury toxicity (google to find it), I decided to resume Andy Cutler chelation with dmsa only. My daughter experienced a very immediate and clear improvement in the psoriasis and it eventually went away entirely. A year later, it cropped up again, though less severe, and again it seemed to respond to dmsa chelation and disappeared again.
I know. Anecdotal. I have since found several articles that link mercury and psoriasis. There are plenty of reports that link mercury and chronic fatigue too and I suspect there may be journal articles as well, though I never have fully investigated that.
IMO, IMPACT FACTORS are NOT A VERY GOOD MEASURE OF THE QUALITY OF SCIENCE--much as the pharmaceutical companies and those in power, or at the top of mainstream science, would have you believe. Read more about impact factors and how they are generated and the faults of this method of "rating" science papers. I think the whole impact factor business is anti-science as it allows many scientists to simply ignore dissenting science. Peer reviewers (who are generally the current mainstream thinkers) often determine what studies get published in the "high impact" journals. Its like the church getting to decide if Galileo's or Darwin's findings should be published. Seriously, google "impact factor" and dangers and that should lead you to some discussions of the failings of the impact factor system.
The NIH and the pharma companies would like nothing more than to discover a new "bug" that they can research endlessly and provide new drugs to treat. So I am not buying this--and that is only partly because I have found a new paradigm for health that seems to work and makes a whole lot more sense to me.
Posted by: Sue | September 24, 2010 at 09:07 AM
I've been following the XMRV news from before the Science paper was published. Have ME/CFS and am XMRV positive.
That's an excellent summary and I thank you for that.
One tiny quibble on your use of the word "linger" with reference to CFS.
It's a painful, horrible "living death" and in some cases the actual cause of death for patients. I wouldn't wish it on my worst enemy.
In the UK we have lost people recently due to strange sudden deaths and suicides. That doesn't count the people dying young through cancer and heart disease.
We aren't lingering, I would have killed myself a long time ago if I did not have a loving partner as my quality of life is so poor.
No drugs can even start to control the physical symptoms I experience every day. Quack "cures" abound and drain what resources we have.
The symptoms of the disease are so severe that I cannot leave my bed for most of the time and cannot look after my own personal needs (i.e. bathing, cleaning, feeding).
That's been for decades now.
My warmest wishes for a treatment for both of these terrible diseases soon. I hope to still be alive for it.
Posted by: LondonGirl | September 24, 2010 at 09:04 AM
I'm with Maurine. I am wondering how to get tested for XMRV. Is this something that a GP or Pediatrician can order test for?
Posted by: Pamela | September 24, 2010 at 09:03 AM
I have had CFS for 23 years and both my children have autism. I've always know that this is no coincidence.
Posted by: steve | September 24, 2010 at 08:38 AM
Best article about XMRV/autism/CFS so far. THX!
Posted by: Diesel | September 24, 2010 at 08:33 AM
My question is: Do vaccine shots contain the XMRV virus? If not, where does it come from? Thanks for your informative article.
Posted by: A.F. | September 24, 2010 at 08:28 AM
Kent, with all due respect, I disagree.
"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."
This research seems to be playing into pharma's allopathic (xenobiotic) agenda, perfectly. They need markets for their new biologicals as well as for those currently on the shelf.
The epidemic of autism is man-made. Just as for infection with HIV, the cure does not lie in further attempts to outsmart the "germ". The cure rests in eliminating the conditions which predispose to the "infection" in the first place.
I would be VERY interested to know if the transcribed DNA from XMRV emits a specific EM frequency, perhaps similar to that which the transcribed DNA of HIV has been found to emit.
What is the sensitivity and specificity of the test for XMRV positivity? HIV tests have a subtantial number of biologic false positives. Along the same lines, the tests for H1N1 positivity have not exactly been stellar.
Posted by: patrons99 | September 24, 2010 at 08:23 AM
Thanks Kent. Wondering if regular hosptials are now testing for XMRV or is it still just that specialty lab in, I think, Nevada?
Posted by: Maurine Meleck | September 24, 2010 at 08:00 AM
Check out Garry Gordon MD's site. www.GordonResearch.com
I met a handful of Dr. Yurkovsky's patients that he cured of chronic fatigue. His method was used to get the viruses out of the body. From my research and working with Dr. Y (for myself and children - all of us immuno-compromised) it's a multi-tiered approach which includes detoxing for heavy metals, getting at viruses (if there), diet etc... There are doctors out there addressing the virus issue and helping people to get their immune systems back on track. It's not an easy task and does NOT work for all. Great informative article.
Posted by: Claudine | September 24, 2010 at 07:01 AM