Autistic Child Tests Positive for XMRV
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Katie
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Wow, this could be potentially very huge. Maybe we should be keeping an eye out for any XMRV studies, not just ME/CFS related studies? Blimey.
XMRV and Autism
I also asked Dr. Insel about the recent discovery that a retrovirus, XMRV, had been found in 98% of all patients with chronic fatigue syndrome. Some researchers say the virus may be implicated in autism, as well.
"We are hot on that, and I wish I could tell you more," Insel said. "All I can tell you is that we have an intramural program here which is kind of our home team, which has seen about 400 kids with autism over the last couple of years. And they have been looking at regression; they've been looking at recovery." He said the researchers "jumped on the XMRV thing even before it was published."
Dr. Insel said that he had heard that researchers at the University of Nevada had identified XMRV in about 40% of ASD children studied. "I have been trying to track that," he said. "There is a paper that has been submitted, but I haven't been able to get it, and I don't know what the data look like. But I think this is really interesting."
Why? Because, he said, "If we could just find a small group, and the opportunity to begin an antiretroviral treatment regime, that could be terrific. That would be the kind of thing we're really looking for in this field, is finding the subgroups that might have specific therapies that would make a difference."
I also asked Dr. Insel about the recent discovery that a retrovirus, XMRV, had been found in 98% of all patients with chronic fatigue syndrome. Some researchers say the virus may be implicated in autism, as well.
"We are hot on that, and I wish I could tell you more," Insel said. "All I can tell you is that we have an intramural program here which is kind of our home team, which has seen about 400 kids with autism over the last couple of years. And they have been looking at regression; they've been looking at recovery." He said the researchers "jumped on the XMRV thing even before it was published."
Dr. Insel said that he had heard that researchers at the University of Nevada had identified XMRV in about 40% of ASD children studied. "I have been trying to track that," he said. "There is a paper that has been submitted, but I haven't been able to get it, and I don't know what the data look like. But I think this is really interesting."
Why? Because, he said, "If we could just find a small group, and the opportunity to begin an antiretroviral treatment regime, that could be terrific. That would be the kind of thing we're really looking for in this field, is finding the subgroups that might have specific therapies that would make a difference."
fresh_eyes
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Wow! That's pretty huge! It's so great to remember we're not alone in this.
Molly29, is that post quoted from somewhere? (And btw, welcome!)
Molly29, is that post quoted from somewhere? (And btw, welcome!)
http://www.ageofautism.com/2009/12/...no-question-about-environmental-factors-.html
Thanks fresh_eyes for the welcome...and it IS good to know "we are NEVER alone" GOOD STUFF!
In a small scale preliminary study (15 or so patients) by Whittemore Peterson Institute around 40% of children with autism tested postive for XMRV DNA, with nearly 60% showing presence of antibodies.
As for WPI commercial test, reports so far all kids have tested positive.
As for WPI commercial test, reports so far all kids have tested positive.
fresh_eyes
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Gee whiz, all??? That's way more than CFS can claim! Any sense of how many kids have been tested?
Wouldn't it be wonderful if XMRV provided some answers for those families? Somehow I find it even more exciting than answers for CFS...
JillBohr
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Oh Summer,
You are so wonderful for posting this. I have been wondering what is going on with the testing of autism. I ordered 2 kits for my kids but do not have the money yet to get them tested. I may bite the bullet and just put it on my over burden credit card and just order one test for my oldest since he has the most severe symptoms. I do worry since my kids were born and raised in Europe and the XMRV studies in Germany and UK have not turned up anything yet. We have been in the states for several years now but I wonder if they may have a different strain.
All the best,
Jill
You are so wonderful for posting this. I have been wondering what is going on with the testing of autism. I ordered 2 kits for my kids but do not have the money yet to get them tested. I may bite the bullet and just put it on my over burden credit card and just order one test for my oldest since he has the most severe symptoms. I do worry since my kids were born and raised in Europe and the XMRV studies in Germany and UK have not turned up anything yet. We have been in the states for several years now but I wonder if they may have a different strain.
All the best,
Jill
Yes indeed. My heart goes out to all families raising children with autism, and adults, struggling to live with autism, especially those most severely affected. I hope all of us find answers and health.
JillBohr
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jill....just to let you know..i think the test kits for XMRV are only good for 90 days.
sue
Oh dear, I have to get with the program and get those kits out prompto. I rec'd them in the beg. of November I believe.
I do, too.
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I have ME/CFS and 2 close relatives on the autism spectrum. My late brother (died age 43) born with partialtrisomy 9 was on the autism spectrum. He was suffering major neurological problems and fighting a bad bronchial infection when he died (XMRV related?) Yy oldest son is also on the spectrum. I think it would be neat to do a poll to see how many of us have close relatives on the autism spectrum.
My brother, was never dx'd but I'm sure he had something similiar to ADHD/dyslexic, my daughter is ASD. I was thought to have Turners Syndrme not long after birth, failure to thrive, plus other signs. At 14 we were told they were wrong.
Turners Syndrome is a deletion of one of the legs on an x-chrosome I believe. I am currently awaiting a refferal for checking fragile-x, which my ASD daughter fits the description for, almost to the letter.
Fragile-X is caused by a mutation that repeats and repeats, the more repeats you have the worse yr chance of being affected by fragile-x.
Now what is it that could write itself into your genes and repeat itself, surely nort something similar to XMRV.
Turners Syndrome is a deletion of one of the legs on an x-chrosome I believe. I am currently awaiting a refferal for checking fragile-x, which my ASD daughter fits the description for, almost to the letter.
Fragile-X is caused by a mutation that repeats and repeats, the more repeats you have the worse yr chance of being affected by fragile-x.
Now what is it that could write itself into your genes and repeat itself, surely nort something similar to XMRV.
anne_likes_red
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There are many similarities when you look at what's going on in the gut, with methylation, metals etc in both conditions. Dietary advice from doctors treating biomedically is often very similar too....esp re carbohydrates.
http://forums.aboutmecfs.org/showthread.php?646-Autism-and-XMRV - that's the earlier thread started (by Summer) about Autism, for benefit of the recent new members.
There was a poll run which I can't find right now...back in Nov i think
Interesting to see how this turns out for Autism - another condition that seemed to become almost epidemic after the mid 1980s.
http://forums.aboutmecfs.org/showthread.php?646-Autism-and-XMRV - that's the earlier thread started (by Summer) about Autism, for benefit of the recent new members.
There was a poll run which I can't find right now...back in Nov i think
Interesting to see how this turns out for Autism - another condition that seemed to become almost epidemic after the mid 1980s.
It might be of interest to some that Pediatrics published a report with the conclusion stating, "These results suggest that disrupted MET signaling may contribute to increased risk for autism spectrum disorder that includes familial gastrointestinal dysfunction".
http://pediatrics.aappublications.org/cgi/content/abstract/123/3/1018
Thanks for posting this as I am waiting for new info to come out from WPI on autism and for autism groups to become more aware of XMRV. As soon as XMRV testing comes out on the market and is covered by my insurance my son and I will both be tested.
http://pediatrics.aappublications.org/cgi/content/abstract/123/3/1018
Thanks for posting this as I am waiting for new info to come out from WPI on autism and for autism groups to become more aware of XMRV. As soon as XMRV testing comes out on the market and is covered by my insurance my son and I will both be tested.
usedtobeperkytina
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This is interesting. I think it shows that a lot of people who don't have the CFS diagnosis are getting the test. So we should consider this in the 36% positive statement. How many with many other illnesses are rich enough to get a test because they suspect it.
Tina
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Tina,
According to Dr. Mikovits, the WPI research also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia. So I would imagine these groups of people are as anxious as those of us with CFS to be tested and to have a determination about exactly what role XMRV plays is these diseases.
According to Dr. Mikovits, the WPI research also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia. So I would imagine these groups of people are as anxious as those of us with CFS to be tested and to have a determination about exactly what role XMRV plays is these diseases.
D
DysautonomiaXMRV
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It would be useful if the WPI could publish the research regarding Autism, Atypical MS and Fibromyalgia in 2010.
This would further our cause, as it could show XMRV is a 'disease' causing entity - rather than something that is assumed to possibly only cause 'Chronic Fatigue'.
Chronic Fatigue is only a symptom, the sooner we get XMRV linked to diseases - the better.
Ironically and infuriatingly we have disease too - just a silly label for it. CFS.
I read the British Government may have to give away Swine Flu Vaccines - it would be helpful to buy XMRV test kits instead once they're available. Thanks to Professon Simon Wessely's Imperial College false research, (rightly slated by the WPI, CAA) that will never happen.
This would further our cause, as it could show XMRV is a 'disease' causing entity - rather than something that is assumed to possibly only cause 'Chronic Fatigue'.
Chronic Fatigue is only a symptom, the sooner we get XMRV linked to diseases - the better.
Ironically and infuriatingly we have disease too - just a silly label for it. CFS.
I read the British Government may have to give away Swine Flu Vaccines - it would be helpful to buy XMRV test kits instead once they're available. Thanks to Professon Simon Wessely's Imperial College false research, (rightly slated by the WPI, CAA) that will never happen.
fresh_eyes
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Interesting link, Levi.
Makes me wonder what CFS people's pupil response it like.
Makes me wonder what CFS people's pupil response it like.