"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Monday, September 27, 2010

The Age of Autism

My Wife, My daughter and XMRV: Written by Kent Heckenlively


"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."

I am brutally reminded by this article that PWC's may not be the only victims of past and present CDC/NIH ME/CFS negligence.  In the Dr. Judy Mikovit's poster presentation released by the 1st International Conference on XMRV “Detection of Infectious XMRV in Peripheral Blood of Children”, her results revealed 14 out of 17 autistic children tested positive for XMRV. And of the 17 families, only one had all members of the family test negative for XMRV.

What's so incredibly tragic and unconscionable is that by the overt actions of the CDC ignoring and dismissing ME/CFS patients since 1984, and their rewriting of the ME/CFS definition in 1994 (thus broadening it out to encompass psychiatric depressed patients who did not have ME/CFS by excluding at least 3 diagnostic neuro-immune markers that are classic, and rigid ME/CFS symptoms), this has potentially led to an epidemic of neruo-immune illness in the US. If the CDC had paid the Slightest attention to ME/CFS patients and their doctors who had the physiological evidence that directly pointed to a neuro-immune illness, this might not have happened. Period.

I pray to God that someone at the CDC who has a family member or child with Autism did not participate with the dismissal of ME/CFS patients at anytime since 1984. I cannot imagine the hell they will go through if it is found out that XMRV plays a part in children with Autism, and that their child has XMRV, and that they may have had answers 20+ years ago.  I also pray that if it comes to pass, and this does affects someone at the CDC who knows first hand of the actions the CDC and the NIH took to deny any research towards ME/CFS, that they come forward openly and expose it. My biggest fear is that the NIH and the CDC will try and glaze over any overt and covert fraudulent actions they were involved in during the last 25 years, and try to promote the idea that they are blameless. I pray to God this does not happen.  We cannot let this happen.

I pray to God that XMRV does not play any role in children who have Autism. But when I look at the data, I am heartsick about the real possibilities. Being sick at 54 with ME/CFS (and XMRV positive) is one thing. I at least lived a good 35 years on earth before being stricken with a life worse than death. It's sometimes unbearable to think of all the children with ME/CFS.  And when I think that children of autism could be directly the result of CDC and NIH negligence as well, I just want to exit here as a willing participant of the human race. The possibilities are horrific, and I do not wish to be in any way genetically associated with the human beings that played a hand in this.

NOTE: Check out Hillary Johnson's article on this: On the Cusp?

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1 comment:

  1. I have had CFS for 23 years. I have a 13 year old and a 10 year old and both have been dianosed with high functionin autism.
    I've been scoffed at for suggesting that they are connected over the years. But call it parents intuition but I know that my CFS is connected in some way to my childrens CFS.
    There is no Autism in my family but my Mom, Brother and Sister all have CFS.
    They are definately connected.