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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Virus found in ME/CFS Children in Scotland

Eleanor Bradford, a BBC Scotland health coresspondent, reports the evidence of a study that reveals abnormalities; a 'virus' in the blood of children with ME/CFS. They are not using the 'retrovirus' word, but as close as they can without being politically incorrect, imho.

It's such good news!, and it raises the hopes of all ME/CFS suferrers aross the pond that maybe, just maybe, it's about time for those UK proponents of the psychobabble bullcrap to get their heads out of their asses, and own up to the fact that they have been stupid is, as stupid does.

Study shows ME/CFS 'virus link' found in children

And this from Mail Online (Read the comments):

Scientists claim ME illness is NOT 'all in the mind'


NOTE: Do you think I am overly upset about this? I am. What the UK has done (and IS doing) to children of ME/CFS is criminal. Some were forcibly removed from their homes (doors kicked in), and housed in mental institutions where they were locked in standup tables, or denied food if they did not exercise. One woman, on release, died within weeks of being dismissed form the institution due to the strain of the experience. So yeah, I'm mad.

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The Persistence of Yellow

"On Tuesday, she woke up and realized she had forgotten the definition of the word 'Impossible'.

She decided it must not have been important."

-- From "the Persistence of Yellow"; a book by Monique Duval

Well, that sums up my Tuesday morning this week quite beautifully! What I was sure would be impossible to do, the WPI (via the ALter/Lo paper), has broken the CDC's self-propelled embargo on ME/CFS research!

Thank you Drs. Alter (NIH) and Lo (FDA), and congratulations on your paper that confirms (and actually extends) the results of the Mikovits/Lombardi paper in Science published on October 9, 2009. Their paper revealed an 85% positivity of ME/CFS patients to XMRV/MLV, and a 6.8 positivity of health controls with the virus as well.

Dr. Judy Mikovit's explains about XMRV and MLV.

And so it begins!

We're on the fork of the correct road. Now to get evidence of potential transmission, ME/CFS and XMRV/MLV causality and on to potential treatment trials.  But today, it's about quiet time and reflections; bubble baths and candles, and maybe, Just maybe Ben and Jerry's. But not before I say something about the WPI, and those who made this a reality.

Without the Whittemores and the WPI, without Dr. Peterson, and all the other dedicated ME/CFS clinician pioneers who Never gave up (Drs. Klimas, Cheney, Bell, Lerner, Lapp to name just a few, and please forgive me if your name is not here); without Dr. Mikovit's 20 year background with the NCI, and without her eureka moment that helped her decide to align her hypotheses with the WPI, make no mistake; None of this would have happened.

There are points in history where, just as in plate tectonics, enough pressure and time reveal new fissures and cracks in what was known. The initial earthquake is enough to jar people from their houses and places of business, and in this case, our medical establishments. And it's just beginning; so stand by for the aftershocks, as stories of what the world experienced come forward, and where science will move to next.

For the media storm that followed yesterdays earthquake, visit this blogs new additional page:

The Alter/Lo Paper

I am also including a few major advocate blogs that deserve attention. If you want to cut to the main story, and a quick tour of the backstorys (20+ years in a quick digest) go here for a clear understanding:

The Patient Advocate

CFS Central

Living With Chronic Fatigue Syndrome

Also?, Kassy, a friend on facebook wants to set the record straight for those who even after getting the facts about the XMRV/MLV findings are Still saying:

XMRV? Tired all the time syndrome? What's all the fuss?


It was a Glorious WIN for the WPI and for ALL ME/CFS patients! Celebrate!

 

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Not a Dry Eye: Annette and Andrea at the WPI CMM Inauguration

Where it all began, how it gained momentum and where we are All headed, thanks to Annette, Harvey Whittemore, and Andrea Whittemore-Goad, Dr. Peterson, Dr. Mikovit's team, and the rest of those who worked so very hard to make the Whittemore Peterson Institutes's Center for Molecular Medicine a reality, and hope for all of us. Andrea, it was so delightful to see you up there!

For additional information from WPI, the Press and Advocates:

WPI Press Release: WPI Celebrates new Building Dedication

InvestinME.org: Opening of the WPI Neuro-Immune Disease Center

The Rainmakers: ME/CFS Patient Advocate 

Hope Soars for Research Center 

X Rx was there :+)

Andrea at the WPI/CMM sign describing the mission:

Ours Are The Wings Of Hope.  

A Testament to Purpose, Patience, and Overcoming the Odds. 

Soaring over Barriers to Bring Dignity and Relief to Patients and Families Around the Globe.

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When I was 95% bed and couch bound, and at my sickest during the years 2001-2006, the one thing I learned the hard way was that although I couldn't promise the next day would be better, I could without a doubt, promise myself it would be different. "Different" was something I could count on, and a promise I could hang onto realistically. Now I can say to myself:

Tomorrow will be a Better day.

The WPI has given me that. What an extraordinary, singular experience I never thought I would have. God Bless you all.

Renewed Hope: WPI's Brainchild is Born

The Whittemore Peterson Institute for Neuro-Immune Disease at the School of Medicine on the UNR (University of Nevada, Reno) campus, held it's grand opening Monday, August 16, 2010. It's like I have been lifted up above the clouds where the air is clean and pure. It's a new day. A special HUG to Andrea Whittemore, who represented all ME/CFS patients yesterday as she read from a letter she had written purposely for the grand opening.  Thank you from the depths of my heart Andrea. You are an angels' angel.

The Whittemore Peterson Institute Celebrates Formal Dedication to New Building (Press Release).


Take a walkthrough here:

If the grand opening wasn't enough to bring the sunlight in (and it was), Dr. Judy Mikovits revealed to the Reno Gazette Journal yesterday (Monday, August 16), that Dr. Alter's (FDA/NIH collaboration) XMRV ME/CFS paper will be released in September, and it confirms their findings that there is a high association of XMRV in ME/CFS patients.

"“There has been an issue over whether anybody could replicate our study, and it will not only confirm our findings but extend our findings, which is really exciting for us,” she said"

Findings by Reno scientists confirmed by U.S. government

Dr. Judy Mikovit's and Dr. Vince Lombardi (shown below) were authors of the research paper published in Science Magazine on October 9, 2009, that revealed to the public for the first time, that XMRV was present in the blood of 67% of the tested ME/CFS patients.

Knowing there are now 3 HIV drugs that suppress XMRV in vitro, Dr. Mikovit's said:

“We totally expect at least one clinical treatment trial before the end of the year,” she said. “That is our goal and that’s what this new facility is for.”

Dr. Sanford Barsky, who will be involved with the breast cancer reseach at the center, is shown here in the new lab. He is hoping to discover the causal factors of breast cancer latency.

An extended RGJ article on the center is here:

New UNR center to aid in fight against numerous afflictions


Validation is a tender eureka moment for those of us who have suffered for anywhere from 5 to 25+ years with this illness that has robbed us of everything in life, including the support from the medical community that has believed the CDC dogma that ME/CFS is a psychological condition.  We have been labeled malingering and lazy, crazy and that we have "Abnormal illness beliefs". All the while there are over 4000 pieces of literature published since the 1980's that has proven the physiological basis of this illness including immune, neurological and cardiac system abnormalities.

All of this comes too late for those who have passed away since October 9, 2009, including the two ME/CFS patients we lost just a few days ago. So for me, this day was for them and their surviving families.  I am praying that those suffering can hold on a few more months until the WPI Neuro-Immune Disease Institute opens its' clinic doors later this Fall. Until then, my days are a bit brighter; my hope is renewed.

Thank you Annette Whittemore and family for making the dream come true.