xmrv and autism

[Mark]

I'm finding his question of whether or not to mention the vaccines really tough.

Until a week or two ago, I don't think I would have believed that the MMR-autism connection was real, and I'm pretty sure that the mere mention of anything to do with this subject will automatically switch off more than half of most audiences.

They can be with you all the way on the link with the rise in autism, the similarity and possible link between CFS-autism, the link with XMRV to both...but then you mention the vaccines and they will revise their judgement of everything you have said up to that point, and many will decide you are likely to be wrong.

But it's hard, because the understanding of how a retrovirus in the immune system could corrupt our responses to almost anything, combined with a patient's knowledge that some of us are over-sensitive to environmental toxins from mold to toxins, others to virus and infections, others to stress and trauma, some to all of the above...the common thread in all these is an extreme sensitivity to specific triggers causing unusual, even 'medically impossible' phenomena, so I can't just dismiss the idea that a vaccination could be one of a number of types of trigger that could wake up a retrovirus in the immune system.

I might wish to describe how well the XAND science fits with my own experience with "Multiple Chemical Sensitivity". But that world also brings its own baggage and perhaps for people who have made up their minds about MCS that would also be a step too far. That would be tough for me, because my experience would have been ruled politically inconvenient.

So I find that since I too am 'impossible', I can't just dismiss the vaccine link, especially because the numbers at risk in any study would be very small (a fraction of 1%) and there are other confounding factors that could hide the link (the likelihood that many of the controls will also develop symptoms in the presence of any other trigger), and most powerfully because of the sheer number of people who have said "I have CFS and my children have autism".

But we should all be very much aware that questioning vaccines, in many contexts, will tend to undermine the rest of our story.

 

[anne]

Mark, that was really well said.

 

[Marylib]

Thanks for the info

Wow. I had no idea. Never had kids so I was ignorant. I don't envy your choices.

My GP wants me to get a tetanus booster, as she says it is common with people who like to garden....I don't dare, I am afraid. Ah well I am too sick to do much gardening these days so maybe I won't get it.

 

[willow]

Only anecdotal points.

Many of the parents that I have 'chatted' with who believe they have vaccine damaged children, I'm meaning children on the Autism Spectrum are not anti-vaccine, they just want the vaccines to be safe. I'm not feeling up to searching, but if you have look at some of the ingredients vaccines contain, I struggle to think they are safe for anyone, let alone babies and children. Some contain methylmercury, which is a form of mercury that freely crosses the blood brain barrier, unlike some aluminium, also dangerous, but it's not just toxic metals, there's all sorts in there.

The number given to children has enormously increased. Why? And what's the accumulative effect? How much of that is about healthcare, and how much about developing a new income stream?

For me too the concept of group immunity is alluring, but not at any price.

And though I don't have children myself, I can see it is a huge dilema. If vaccines were cleaned up, there would be less to worry about.

 

[anne]

Someone will know more about this than I, but it seems the focus on vaccines has been their contents (and I agree that those are a concern). But the researchers have been looking at the contents and any toxic qualities. This is the first I've heard that it could be the act of vaccination itself. Has anyone looked at that?

 

[margib]

hey, Marylib & everyone,
I just wanted to add my 2 cents, if that's OK! I hope I'm not hijacking the thread! I have serious issues with vaccines. For starters, I went from having CFIDS to getting vaccinated (I was volunteering at a hospital & had to get DTAP; they told me Whooping Cough was making a "come back," flu; this was last year, & TB scratch) & then not being able to walk, lift my head, talk, etc. Mercury is still in vaccines they give to adults, & is in many flu & Hep B vaccines they give to newborns & kids. I was in denial that I could be effected.
Vaccines for kids seem to be bad no matter how you look at it. I have one child who got a lot of vaccines for my comfort level (all her HIB, & DTaP, which is a scary one), & a now 2 year old who has almost none. I am no doctor, of course, but I see a difference. My older daughter has serious sensory integration issues & other issues I attribute to her getting vaccinated. The only time I'm a little "relieved" to have vaccinated them for DTaP (my youngest got one dose) is when Whooping Cough does go around. My DO, Michael Payne, & myself agree that a lot of the viruses they vaccinate with (esp. DTaP) are "stealth" viruses, viruses stronger/more virulent than the typical virus. Luckily, I live in a place where many people do not ever vaccinate their children, & though it is a contentious subject, you have support for your decision. So for the record, I am anti-vaccine...greening the vaccines (with aluminum, for instance) will not protect my babies. Vaccines shed for 48 hours after being given, especially if a person is in water. I found this out after my 2 year old swam in a baby pool with her cousin, who's been given every vaccine available by age 2 (couldn't get them by the recommended 18 months, b/c he was sick too often!), & she had a fever of 107 due to "an enterovirus of unknown origin," & I know in my mama heart it was from her cousin having just gotten his IPV (inactive polio virus) vax. I agree, Mark, that vaccines have the potential to undermine our story in a big way. So do the findings about the relationship to prostate cancer. So I hope the research is very clearly articulated to be for CFIDS/ME & the focus/mission statement remains firmly intact. I just think that Autism & Cancer get press. Perhaps more attention will be placed on XMRV in general if there is an autism link, & if that's true, hopefully our neuro-immune disease will get more widespread attention as well? What do y'all think? Other mamas of small kids?

 

[Mark]

Having spent so much of our lives looking into every aspect of health, we've all picked up particular attachments to theories or health issues, and we will probably now find that some of these were red herrings. Whether mercury, for example, is toxic or not, I don't know. I do know, though, that when this suggestion is put before medically-trained people, they tend to roll their eyes. What's interesting to me is that what we have now with XMRV is a new medical explanation as to why a small subset of the population - maybe 0.5% - can experience extreme atypical reactions to vaccines, as many of us have.

The important thing is that we can now explain all of our experiences in this area without citing mercury, squalene, or anything else we may have suspected.

XMRV can explain the atypical responses to vaccines and medication experienced by CFS patients, and it can explain how a vaccine could trigger a latent XMRV infection to develop into XAND. It can explain those things without recourse to mentioning mercury or anything else, and since all the professionals have been telling us forever that those mercury connections are nonsense, it's probably prudent to assume for now that the adverse effects we've experienced are indeed atypical reactions and no longer require any of the other 'impossible' explanations we've advanced in the past.

In other words, as with so many else, XMRV can explain why both sides of the argument were right, and instead of looking at contentious theories around squalene and mercury, we would probably do better to concentrate on the way XMRV can explain the effects we've observed. After all, a lot of our symptoms have been dismissed over the years because our explanations for them were biologically implausible: XMRV is biologically plausible, so there's no real reason to look further than that for an explanation at the moment.

 

[froufox]

Hi Anne,

My understanding and what I have heard people theorise, and actually what some research has found is that because vaccinations stimulate humoral immunity which is the part that produces antibodies (which is what vaccines are meant to do)...cell mediated immunity can suffer as a result and this may lead to an increase in other infections, perhaps latent infections eg viruses that the body up to that point is keeping under control.. because of this change in the balance of bacteria in the body.. I think this is was what Judy Mikovits was talking about when she speculated about how perhaps a latent XMRV infection may be triggered by vaccines. I certainly feel that vaccines triggered my ME although I have no idea if I have XMRV.

This article explains a bit more about how vaccines work..

http://www.whale.to/vaccine/incao.html

It certainly makes sense to me and fits in with my experience as when I get acute symptoms of discharge eg mucous production, sneezing etc my chronic ME symptoms improve so I can definitely relate to the TH2 dominance idea.

Plus of course thimerosal etc that is contained in some of the vaccines will also deplete glutathione, shunt the immune system towards TH2 which will all have a knock on effect on immunity.

Certainly there is a evidence that vaccines can not only trigger other disease processes but also the disease that they were meant to offer protection from in the first place! & there are examples where epidemics of particular illnesses have occurred in populations that have been vaccinated for those illnesses so it is a myth that vaccines are always effective..

My view is that that anything that encourages awareness and debate about vaccines in whatever context can only be a good thing.

Someone will know more about this than I, but it seems the focus on vaccines has been their contents (and I agree that those are a concern). But the researchers have been looking at the contents and any toxic qualities. This is the first I've heard that it could be the act of vaccination itself. Has anyone looked at that?

 

[_Kim_]

Vitamin Diagnostics contact info

Apparently they have moved. New info:

Phone: (732) 721-1234
Vitamin Diagnostics
540 Bordentown Ave
South Amboy, New Jersey 08879

That address and phone number is for another company, Accumed Diagnostic Laboratory. It is listed above Vitamin Diagnostics on one page and that's likely how it got copied here.

I found this address and phone number listed on several websites:

Vitamin Diagnostics Inc - (732) 583-7773 or (732) 583-7774
2 Industrial Dr, Keyport, NJ 07735

I've decided to get the methylation pathways panel done before I start the B12 protocol. I will call tomorrow to verify their contact information.

 

[susan]

My homeopath is detoxing a lot of CFS people and many of them are doing really well....I am yet to prosper. I am going to do the Methylation thing too as I personally believe it makes more sense. If indeed it is partially blocked then there could therefore be a mercury problem with the body not able to detox properly. This then creates the environment for pathogens to breed.

Homeopath claims vaccines are cultured in mercury and that is why they have always used it as a carrier into the body. The virus cant stay in the body without it.

Saw a brilliant Doctor turned naturopath last week and he said he believed the Transfulation Pathway.....methylation...... is the problem ...genetic he claims and he can go around it.

 

[usedtobeperkytina]

No

I don't think anyone has mentioned the rise in autism.

The rate based on year of birth starts a rise in 1985. It peaks in children born in 1997 and starts a gradual decline.

Now, let's say that XMRV was first being spread in adults and some children in the mid 1980s. Can we see the possibility that as it saturated the adult population, whether they developed CFS or not, these adults started having children who have XMRV also? So that a few years after the rise in CFS, we would see a rise in autism caused by XMRV (if in fact it is.)

I think autism has to be caused by an infectious agent because the case numbers show it. Not only because of the rise. But also because it has fallen steadily among children born after 1998.

Tina

 

[Mark]

Wow, cool data Tina, any idea where I could get that sort of detail for other conditions?

The levelling off and slight decline, since 1997, is a bit odd, don't know where that might fit in.

The details of the MS rates contain massive clues as well:

"As with many autoimmune disorders, the disease is more common in women, and the trend may be increasing. In children, the sex ratio may reach three females for each male. In people over fifty, MS affects males and females almost equally" (Wikipedia)

Intriguing, no? "Disease onset usually occurs in young adults" - so people aged 50 would have had onset prior to the 1980s, and after that time, the rates start to rise, particularly in women. Sound familiar?

As with autism, it's important to bear in mind that there are known to be genetic factors as well, and that the condition existed before the XMRV epidemic. This complication has baffled researchers, read the wikipedia post about MS to appreciate just how hard it is for scientists specialising in one aspect of one single condition to imagine a hybrid theory where an epidemic raises rates and adds an epidemiological element to an already-existing genetic element: they divide into two camps and argue whether it's genetic or infectious and then pat each other on the back 20 years later when they work out that it's both, so they were both right.

Anyway, all the evidence in all these conditions is pointing in exactly the same direction: to an epidemic rise in multiple conditions, all with strong gender biases, since the 1980s. I'm just getting more and more convinced that XMRV is about SO much more than just CFS.

 

[curry]

It is not a representative study, but an interesting read:

http://www.ageofautism.com/2010/09/my-wife-my-daughter-and-xmrv.html

"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.

 

[Enid]

Lovely to hear Dr Mikovits "speculate" from her expert background (so few). Please keep going !

 

[natasa778]

As with autism, it's important to bear in mind that there are known to be genetic factors as well, and that the condition existed before the XMRV epidemic

the "known genetic factors" account for less than 5% (if that) and consist of well defined monogentic disorders, such as fragileX, SLOs etc. Everything else is pure speculative bullshit. There is a genetic factor to autism in as much as there is a genetic factor in someone developing lung cancer after 30 years of smoking 40 cigarettes a day.

Yes of course the condition existed before, firstly there were those rare monogentic disorders, SECONDLY as both HIV and XMRV are capable of causing autism, there would have been other viruses in the past that did the same thing to the brain, absolutely no reason why not!! prenatal rubela, flu, various herpes etc viruses cause brain damage and autism, so yes there would have been those in the past. BUT NOT IN TODAY'S NUMBERS.

Definitely not in the numbers that we see today, cos of the modern way of life and the way new viruses are spread and the way that latent viruses are reactivated - travel, living in proximity to others, vaccinations, toxic environments etc.

 

[natasa778]

14 of the 17 autistic children were positive for XMRV (82%).

I bet other 18% are teeming with ALV and similar.

 

[natasa778]

But also because it has fallen steadily among children born after 1998.

I am not sure that is the case, at least not where I live. If anything the rates are still climbing fast. But anther thing though that the younger kids seems to be less severely affected in total, there seem to be fewer really severe cases amongst newly diagnosed. (this is entirely anecdotal)