Failure to Thrive's Last Post

I started this blog when I learned about XMRV, The Whittemore-Peterson Institute, and the XMRV connection to CFS/ME.

I felt the need to chronicle the critical events that followed since October 9, 2009.

I wanted to create a space where anyone could learn at their own pace what XMRV could mean to them.

I wanted to hold the CDC accountable for their actions since 1984+, when they changed the language and the definition of what CFS is.  I wanted to illuminate that their intentions in re-defining CFS in 1985, by leaving out the meaningful and evidence proven neuro-immune diagnostic markers, was to categorize CFS as a psychological disorder, so the insurance industry could exclude all CFS and Fibromyalgia from receiving disability benefits, in order to save them billions of dollars.

I wanted this blog to be a source for knowledge, links and evidence that CDC has brilliantly, intentionally and effectively dismissed CFS/ME for 20+ years, and that due to their negligence, they may be responsible for a neuro-immune epidemic in the U.S., that never had to happen.

We are still in the early stages of coming to terms of what the parthenogenesis of XMRV means to us all, and to our children. We need federal grants now to the WPI, to help us find out. And if the NIH cannot see fit to approve grants to the WPI, then we all need to donate to the WPI. They have the evidence and the knowledge required to use the funding appropriately.

http://www.wpinstitute.org/

We also need federal ARV XMRV clinical trials Now.

We want to be heard. We want to save others what we have endured for the last 25+ years. We Have to hold the CDC accountable for their past actions, and their present (and might I say 'deliberate') incompetence. Isn't the deafening roar of affirmative studies from the National Cancer Institute, the Cleveland Clinic, the NIH and the FDA enough for the CDC to understand that the issue is theirs' alone in producing negative findings of XMRV's association with CFS/ME?

We have moved on to learning about the pathogenesis of XMRV, while the CDC and the UK still defend their incompetent dogma to their deaths.

We do not need the CDC's opinions anymore in face of the truth. We are leaving them behind. They are still talking, we are just not engaging them anymore. That is, until we see them charged with "Reverse-Fictitious Disorder by Proxy" for turning an infectious neuro-immune epidemic into a fictitious psychological 'syndrome', that has put this generation, and our childrens generations at risk, and possibly in peril.

This blog is here, and will stay here for friends and family.

I invite others with XMRV+, and/or members of their families with XMRV to contact me with emails.

 Much love to you all, from a XMRV+ CFS/ME sufferer since 1993.

~ toadlily

NOTE: I am keeping the Advocacy page current. Feel free to visit the links there. They are a godsend of current information.

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XMRV - REQUIEM FOR A SPECTRE

A chronicle of documented CFS/ME suspected outbreaks since 1934

NOTE: The viewing performance of this on this website has degraded. It could be temporary, but.... I would click on the "Watch on Youtube" option on the bottom of the videa screen below for best performance.

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The UK ME/CFS Secret Files

"It is notable that two of the funders of the UK PACE Trial on "CFS/ME" (the MRC and the DWP) have separate secret files on ME/CFS held at the UK National Archives." Margaret Williams


"... the MRC files (Item reference FD 23/4553/1) containing records and correspondence covering the period 1988-1997, are closed for 73 years (ie.until January 2071):" Margaret Williams

Another secret file on ME/CFS comes to light 

Knowledge or Belief?

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The White House Chronicle

CFS: To Suffering, Add Anger

and here is a link to the PBS video:

WHC King interview with NIH

Thank you Llewellyn King, for a piece of journalism that represents us so well.  You describe our ME/CFS GWS symptoms and disabilities, and the CDC's fraudulent behaviours for the last 20+ years, with dead to rights precission.

This was written by King on September 21, 2010.

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

The Awful Disease Washington Forgot

And from Heidi and CFS Chronicles; her thoughts on his involvement. Thank you Heidi, I love your writing.

Llewellyn King Burst our Bubble

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Strings of Gold

"Validated biomarkers are gold; they are like gold pieces of string that lead to the heart of an illness. They give researchers a foothold on a disorder. What biomarkers do is give researchers the confidence that they can work their way down that string to disentangle what's going on in the disorder. XMRV has been so successful because it's the biggest string found yet in ME/CFS; it’s given them the biggest chance yet to be successful."

From Cort's review on the XMRV conference:

XMRV, Solving CFS and Advances in FM: Report From the OFFER 2010 Conference

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The Age of Autism

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

QUOTE:

"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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Ryan Baldwin: XMRV+

Ryan Baldwin, an ME/CFS patient, was removed from his home in North Carolina in January, 2009, when an unidentified medical doctor reported to the DSS that he was being medically abused by his parents.  His  parents were charged with “Fictitious Disorder by Proxy”.  Ryan spent ten months in multiple foster homes while his parents, who were denied any contact, spent everything they had and more fighting the system to get him back into their care.  During his foster home stays, the foster parents were told there was nothing medically wrong with Ryan. In addition, he was not provided with his wheelchair, and was forced to climb stairs. He was also subjected to exercise 'therapy'.

This statement Ryan gave speaks about the lack of understanding of those diagnosed with ME/CFS.

"Not understanding or having no desire to learn about CFS is no excuse for widespread ignorance. Be it in the medical field, legal system or just everyday life, efforts need to be made to reform the system with a better understanding of this illness".

Ryan and his family learned recently that he tested positive for XMRV (or PMLV/MLV. The acronym's may change while they sort this all out, but the fact that we are infected by a gammaretrovirus is indisputable. See PMRV joins XMRV):

Local family feels vindicated by breakthrough research

DSS needs to be hung from the rafters for this. Imho, they have shortened his life by possibly tens of years, due to the physical strain they put him under, and the potential remodeling of his heart as a direct result.  And that is just one of many ME/CFS neuro-immune related dysfunctions that could have been exasperated beyond the point of no return.  But they weren't the ones who provided the momentum for the medical community to neglect, dismiss and demean ME/CFS sufferers, and/or accuse parents of neglect.

Thanks again Bill Reeves et all., at the CDC, for redefining the Holmes CFS diagnostic criteria (1989), to the Fukuda criteria in 1994, that sealed our fate by cementing the dogma that ME/CFS was psychological, when you knew Damn Well it was Clearly proved with lab test evidence it was not. It was (and still is) the CDC's direct actions that has led to thousands of ME/CFS related deaths. Tens of thousands of children are now bedridden, neglected and shunned, and millions have been labeled lazy and worse by the medical community, who are supposed to actually care and treat the sick in this country. Finally, because of their blatantly fraudulent actions (Osler's Web), tens of millions of other men, women and children in the US are now infected with XMRV. But, at least you saved the health insurance industry billions of dollars of denied disability benefits. That's what was important yes?

And btw Bill et all. at the CDC, the NIH (Anthony Fauci and Stephen Straus (deceased 2007) at the NIAID), and their cohorts in the health insurance industry, how does it feel knowing you are directly responsible for your children, and your grand children, possibly being infected with XMRV?


Backstory:

Bringing Ryan Home

P.A.N.D.O.R.A.'s effort to help Ryan

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ME/CFS, Autism and More

The Whittemore-Peterson Institute: Answers for ME/CFS, Autism and More

We NEED your help. Please donate to the WPI by visiting their website: Whittemore-Peterson Institute

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PMRV joins XMRV as possible etiologic agent of ME/CFS

From Virlogy Blog:

PMRV joins XMRV as possible etiologic agent of chronic fatigue syndrome

And this may help people understand why XMRV and PMRV are almost identical.

In a nutshell? Xenotropic (XMRV or Xenotropic Murine Leukemia Virus Related Virus) means the MLV infects humans but not mice. Polytropic (PMRV, or Polytropic Murine Leukemia Virus Related Virus) means it can infect both. Or better reported by Mindy at CFS Central: "Polytropic viruses infect the original host—in this case mice—as well as other species, whereas xenotropic viruses like XMRV infect species other than the original host."

No worries. Very soon, they will assign a better gammaretrovirus name.

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Dr. Ian Lipkin: Heads up the hunt for XMRV/MLV's in ME/CFS Patients.

Thank you Cort for this!

NIH Steps Up to the Plate - Pathogen Ace Picked to Lead Major XMRV/CFS Study

From the above on some of Dr. Ian Lipkin's successes:

"Pathogen Hunter Extraoardinaire (media)

•Bornavirus - In 1989, Lipkin was the first to identify a microbe (Bornavirus) using purely molecular tools[1].

•West Nile Virus - In 1999, Lipkin led the team that identified the West Nile virus in brains of encephalitis victims in New York State [2]. In April 2003, he sequenced a portion of the SARS virus directly from lung tissue, established a sensitive assay for infection,

•Bee virus HTML clipboard- In 2007, he helped identify a virus decimating honey bee populations

•Mystery Neurological Illness in Minnesota Meat-packing plant - in 2008, the Minnesota Dept of Health called him top investigate a mystery illness, possibly caused by aerosolized pathogens from hog brains.

•Mystery disease - in 2008 Dr. Lipkin identifies a new kind of virus called an 'arenavirua' that may be causing a mystery disease in South Africa"

Amy, on the WSJ Health Blog, reported on this as well:

‘World Class Virus Hunter’ To Head Up the Latest XMRV Study

Sorry I have not been posting lately. My posts are now more filtering of the best ME/CFS news, than responding to them.  As someone else said (and I am shamelessly using their words, and although I went back to give credit where credit is due, I failed to find the statement or its' author again), I think I am in the middle of a cytokine storm lately.

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