Autism and XMRV

Frickly

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Immune dysfunction

My son is on the spectrum and I have talked with several other parents over the years with kids on the spectrum. I think many of these kids have either an over active immune system or an under active immune system. Some are sick all the time and others never get sick. My son was always getting sick and dealing with ear infections until I put him on several supplements to boost his immune system.

That is amazing info ram, thank you. Does your partner know if children with autism are sick more often than the general public?
 

starryeyes

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Sorry to hear your son has Autism and is sick so much Frickly. People with Autism sound very similar to those of us with CFS in that we seem to either catch everything that goes around or nothing.
 

flybro

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XMRV CFS/ME Autism Fragile-X

The only actual known cause of autism is Fragile-X, they seem to be finding similar instances of Fragile-X in autism as the WPI found XMRV in autism.

The Fragile-X chromsome X damage looks signafntly similar to the way I understand that XMRV works.

1 in 259 Females are fragile-X carriers, genes that appear to be involved are NUPIF2 and FMR1. I have seen the NUPIF2 gene mentioned in Kerr's 80 gene study, but I really don't understand what the paper is saying about the gene.

Perhaps being a carrier makes us more likely to get XMRV.

I have a twenty one year daughter, with an autistic spectrun disorder.

I have not yet been checked for fragile-X, but am intending to do so as soon as the Doc rights the referal.

If you have an autistic child please look at Fragile-X sites. look up the symptoms for Fragile-X and and Fragile X carriers.
 

flybro

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I undersdtand your situation, I have a one year old grandaughter, my eldest daughter has CFS/ME symptoms. I can't tell her about XMRV until we know more, she really has a lot on her plate at the moment and I don't want to worry her for something that may turn out to be wrong.

I am goung to get a genetic test for Fragile-X aswell, because my youngest daughter has autism, I'm dx'd with FM MCS, plus my paternal gramdmother had A-Typical MS.


I feel guilty if I tell my girls, and guilty if I don't. But if my grandaughter is due a jab before we know more, I will have to talk to my daughter about it.
 

JillBohr

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Fragile X

Fragile X is in about 5% of the autism cases and if a person has Fragile X, it does not guarantee that they will have autism. There are some physical traits that you can observe in Fragile X carriers (eg. long face, large ears, large genitals). Males are more affected since they only have one X chromosome. Females have two X Chromosomes so if one of the them does have fragile X, the other X chromosome can compensate and they appear unaffected but there is a 50% chance they can pass it on to their children. All children with autism are tested for this gene when being diagnosed. My children were tested and it came out negative.

If you really into studying genes and autism, the MIND institute published an interesting paper in which they found genes predominately in autism and were even able to break down the phenotypes (regressive vs. early onset autism). They did not really pass the scientific "fold" test but the 11 genes that were in both sets did and they were all autoimmune related. See paper here:

http://www.universityofcalifornia.edu/news/article/17200
 

Megan

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Dr Luckett on XPR1 and SYG1 receptors

I am not at all surprised by this finding: XMRV uses the SYG1 protein as a cellular receptor - SYG1 is a neuronal protein that functions as a synaptic guidepost - go figure!

http://cfidsresearch.blogspot.com/2009/11/modus-operandi-part-ii.html

Dr. Luckett, I have followed your blog like others I really appreciate you giving input to this forum. I am really impressed by your elegant hypothesis about why XMRV may cause autism in children but CFS in adults (prior to this I had trouble understanding how this could work). But I am confused about the receptors involved in XMRV infection.

In your blog under 'The Modus Operandi of XMRV: Pt1' you say, 'The cell surface receptors for XMRV have been identified as XPR1 and SYG1' and in Part II you explain how the SYG1 receptor relates to autism. This floored me as it seems so logical. But I also read the 2006 paper that first identified XMRV in prostate patients by Silverman et al. This paper appears to speak of 'XPR1(SYG1)' together as though they are the same thing?

I am confused about whether they are two different receptors, whether they are two names for the same thing, or is XPR1 some sort of subset of SYG1? Or ere they co-receptors as are CD4 and CCR5 for HIV?

If they are not different receptors does this affect your hypothesis regarding autism or does this still hold?

I am not a medical person, so I have had trouble understanding the literature on this, but I would really appreciate if you or anyone could comment on this question. I think understanding which receptors are used by XMRV and whether there are one or two of them, or if they are co-receptors, is important, particularly as I understand some new HIV drugs work by blocking one of the HIV co-receptors (CCR5).

Many thanks,

Megan.
 

flybro

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Fantastic link,

"What we are seeing can reflect something in the environment that is triggering the activation of these genes or something genetic that the children have from the time they were conceived," Sharp explained. "Such an immune response could be caused by exposure to a virus, another infectious agent or even a toxin. Another possibility is that these changes represent a genetic susceptibility factor that predisposes children to autism when they are exposed to some environmental factor."[FONT=verdana,geneva]

[/FONT]I [FONT=verdana,geneva]foud that bit particularly interesting.

Thanks for the link.




[/FONT]
 

Advocate

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Wanda Jones talks about autism/xmrv/priorities

This is from a blog called Strategic Thinking and Execution. The blogger was curious about the xmrv/autism connection, and called Wanda Jones.

Saturday, December 12, 2009

XMRV Task Force at Dept of Health & Human Services

I am curious about the link between XMRV and Autism.

Basic questions, like, is there even a link at all, seem to be outstanding.

As part of my researching, um, googling around, I found this interesting discussion:

new CFS/XMRV Task Force at Dept of Health & Human Services? - Chronic Fatigue Syndrome Forums (ME/CFS Forums) at the PHOENIX RISING.

In the discussion thread one of the people mentions a Dr Wanda K Jones, who apparently is Deputy Assistant Secretary for Health (Women's Health) at the US Department of Health and Human Services. Dr. Jones had sent some emails regarding a task force on XMRV at the Dept of Health & Human Services.

I wanted to know whether the task force was doing any looking at validating the potential link between Autism and XMRV. Her phone number was listed on the page. So I called her.

Imagine my surprise when, within 24 hours, she called me back.

Dr. Jones is a wonderfully no-nonsense person who immediately made me think that maybe, just maybe, at HHS they might know what they are doing. Also, and I appreciate this, she stayed on message the entire time, which made it easy for me to understand what she was saying.

Her messages were few and simple. I will try and repeat without messing them up:

There is a task force which is concerned with the safety of the blood supply.
safety of the blood supply is the single most important priority they have.
they do not really even know at this point if there is a real risk they are trying to mitigate, but HIV/AIDS taught everyone a really big lesson and they are now working hard to avoid a repeat.
The CFS angle seems obvious for validation work, so probably something like that is going on, somewhere.
the allusions to a link between XMRV and Autism were based on a single very poorly conducted study. It may be that the linkage is being looked into somewhere by somebody but wow, just wow, was that a poor idea to bring that up based on the evidence that was presented.
did we mention that the safety of the blood supply is our primary concern just now?


Based on the discussion we had, it seemed clear to me I was looking in the wrong place, but that in doing so I had been provided a clear sense of priorities in Government science: The priority is to protect the majority of the population from a perceived threat, in this case XMRV.

If XMRV were a Flu, the response would be a vaccine. But it's not, so the response is a large working group developing quick screens and tests, applying those to existing samples from the blood supply, and developing a chain of evidence and capability to enable them to decide if the blood supply needs to be protected from this retrovirus.

They are doing this very very quickly. It was indicated to me, that for the good of everyone, this work should really not be disturbed. Soon enough, once the blood supply question is settled, and maybe as part of that process, the question of the contribution of XMRV to disease can be addressed.

At least, that seems to be the plan.

In the meantime, I think I will look around some more and see if I can get anyone to tell me what Autism specific research plans are getting under way.
 

bakercape

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I e- mailed

Autism speaks about the possibility of a connection between xmrv/cfs and autism about three weeks ago. I got an email back the same day from an administrator there who said they promised they would call the WPI to see if anything was in the works. Maybe if other people called or e-mailed autism speaks they could be convinced to fund some research studies into an XMRV-Autism connection.
 
A

amstanley

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Hey guys...

Hey Guys...
Strategic Thinking and Execution is my Blog.
Thanks for the link, I appreciate anybody taking the time to read it.
 

fresh_eyes

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Hey Guys...
Strategic Thinking and Execution is my Blog.
Thanks for the link, I appreciate anybody taking the time to read it.
Hey amstanley, welcome! So you're interested in autism? I think the XMRV/Autism connection is fascinating (though, as Wanda Jones said, we don't really know anything about it yet - but STILL) and I hope all these XMRV-associated conditions will band together.
 
A

amstanley

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Hey guys...

I'm an Autism Dad.

If you're asking about Ubuntu and airplanes, then you've looked at my blog. Yes, those are interesting, so are interactive TV, gravity, epigenetics, consumer robotics, and a whole lot of other things. What are you guys into?

I think the viral disease angle is an interesting way to explain the prevalence we are seeing in Autism, and how it seems to be growing. I'm also interested in the fact that no autism researchers seem willing to talk at all about conducting research into this, and I wonder why that is...
 

Mark

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Hi fresh eyes, yes I do think that's odd, and a good example of how PWCs learning about XMRV before the wider world does might be giving us insights that won't be appreciated by the wider scientific community for months or even years. I think the preliminary evidence on autism is compelling, but it's frustrating that most researchers are inevitably still focused on their own research agenda, and will remain so until the grant runs out. It's the (retro)virologists who need to move in on these areas first, it's in a way pointless asking most existing researchers what they think because they'll have to find out about retrovirology the same as we have.

In autism research I get the impression they are strongly influenced by the genetic research, and I imagine a lot of the work and focus is on that. They will perhaps not be expecting that the rise in autism is XMRV-mediated autism. The beginnings of an epidemic rise in the 80s has up until now been attributed to factors like "detecting it better" and "environmental factors" so it's already become a contentious area; just taking a guess lets suppose there are two strong opposing camps each with their own agendas, both of them dead wrong. In every field XMRV touches it will find people barking up particular trees. I guess you'd need to find a virologist with an interest in autism - maybe it's another Scientific Catch-22?
 

Frickly

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When the XMRV study came out I expected everyone involved in autism research to start talking about it. This did not happen. I am so excited to see so many people on this forum thinking about XMRV and autism. I have felt for some time that CFS and autism is linked in some way. My son receives treatment from a doctor at Thoughtful House. I will email him and ask what their thoughts are on the subject.
 

flybro

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Me my NAN my Daughter

My paternal Gran was Atypical MS,

I was born with a suspected genetic defect, loads of tests, 14 years later was told I was OK.

My daughter has autism and all the classic signs of Fragile-X, I have a simian crease on my hand which is a marker for Fragile-X.

I think I got XMRV in the womb, or from the sperm that made it to mums egg.

I haven't been tested for Fragile-X yet as I only found about it this year.

Bit I am would not be suprised to find that the Fragile-X damage is caused in by XMRV, the damage is part on FMR1 gene mutating and repeating.

Also Kerr mentions NUFIPI2 (i think it is) in his 88 gene study, which he notes as a Fragile-X marker.

Fragile-X is currently the only known cause of some autism.
 

flybro

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Fragile-X

I phoned and e-mailed the UK Fragile-X organsation with info and links, they didn't get back to me.

I have also noticed on fragile-X forums parents/carriers talking about relatives with, fibro, CFS, I think one metioned Limes aswell.