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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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.

To those who left us, and those who remain

There are friends that I have never met on Facebook, but their story reflects my own. I didn't know those who left us due to ME/CFS complications this week, although I do know their names now. I only know that they suffered and persevered, despite unfathomable odds. I do not know those who loved them, that still remain.  Husbands, wives, sisters, mothers, and children. Some of them also suffer from ME/CFS. I don't know them either, but I am reaching out to them just the same. 

In dedication to: 

Aylwin (Jennifer) Catchpole

I have been visiting Aylwin's facebook wall the last few days. I have never experienced anything like the outpouring of messages on her wall. Friends saying goodbye to her; more expressing the profound spiritual impact she had on their lives. Her friends are from all over the world; now gathered together with her, in a singular blessed and divine space. It is remarkable.

Jennifer Catchpole's Wall 

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Kyle also passed away this week. I did not know Kyle. I cannot imagine the pain his mother is going through, and the hell he went through. I am heartsick by what I read that his mother wrote on Facebook.

"I have Hashimoto Fibro/CFS (Kyles mother), we know the HELL he lived and on medicaid forget any good docs. That's what killed him, a doc refusal on Monday, he died that evening:("

Visiting Kyle's mother's wall is another example of how Love creates a holy place. It is Such an outpouring of loving support and of strength, to try and help her get through this time. Her cries of love for her son, and how he died; and moreover how he lived, is an eternal testament to the devout human spirit, and to the immeasurable depths of Christ's Love.


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I did not know either of you, and yet the world feels darker without you.

To those who remain: May God Bless and Keep you and yours. May He calm your storms.

Rest in Peace

FDA/NIH Alter Paper in PRESS

From Mindy at CFS Central:

FDA/NIH Alter Paper in PRESS

Also, read her interview with the CDC:

Q & A with CDC's STEVE MONROE

Thank you Mindy!

Three HIV Drugs With Possible Efficacy Against XMRV

From CFS Central: A good tutorial on the possible HIV Drugs that have been found to move XMRV in vitro.

HIV Drugs With Possible Efficacy Against XMRV

Dr. Ila Singh in collaboration with CSU (My Alma Mater) are focusing on what XMRV does in animal models.

Video Courtesy of KSL.com

Pathogenic Consequences of Xenotropic Murine Virus-Related Virus (XMRV) Expression in the Development of Chronic Diseases

"In mice, viruses related to XMRV cause B-cell lymphoma usually by insertional mutagenesis activating a cellular oncogene as well as causing chronic neurological diseases.


We will present a case of development of such B cell lymphoma in CFS patients. XMRV-infected individuals with both neuroimmune disease and cancer develop an immune response to XMRV.The isolation of infectious XMRV from prostate cancer patients will be shown for the first time. Pathogenic consequences of this infection will be discussed


Conclusion: XMRV, a retrovirus of unknown pathogenic potential, is infectious in humans."


Repeated Detection of Infectious Xenotropic Murine Virus-Related Virus (XMRV) in Human Neoplasia and Neuroimmune Diseases – Source: 12th Intl. Conf. on Malignancies in AIDS and Other Acquired Immunodeficiences, Apr 26, 2010

wootles!

Which came first? The Chicken or the PWC (Patient with CFS)?

Dr. Jamie Deckoff-Jones provides an update, a treatment philosophy, and an answer to the title of this post.


The Experiment in Progress


Dr. Jamie, thank you for your blog. Than you for your dedication to keeping us informed.


NOTE: Addendum from Dr. Jamie

Dr. Judy Mikovits: Science Paper Redux

"After we developed a sensitive cell culture assay for detection of XMRV, we assayed our cell lines and patient material with a highly sensitive assay (developed and kindly provided by Bill Switzer, CDC) to detect the presence of mouse tissue contamination by the identification of murine mitochrondial cytochrome oxidase by real time PCR. All of the cell lines and 101 patient materials tested negative for mouse contamination." - Quote from article


An addendum to the Mikovits XMRV CFS Science publication explaining why the assays adopted by the negative XMRV CFS papers that followed after October 9, 2009, were doomed to fail finding any XMRV.


Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome (Article Addendum)

Who's In and Who's Out at the International XMRV Workshop?

by Cort at Phoenix Rising:


Who's In and Who's Out at the International XMRV Workshop?


Lot's of good discussion in the comments regarding the decision about "Who is in, and Who is out". And, imho, the reason for the guest list is bio-politically clear; It helps continue to stall the truth about XMRV. I mean, telling the public that a retrovirus is associated with specifically rare and aggressive prostate cancer is one thing, but telling them that a retrovirus could be the cause of CFS and that 3-6% of the population could be infected unknowingly with it, and that the CDC failed miserably in containing it during the last 20 years is quite another. So, why the big stall? What can they do now, that they haven't already um.. Not done?


What needs to happen at the federal level is to get XMRV screened out of our blood banks before any conclusive announcements reaches the masses. They certainly do not want any panicked or pissed off voters. So, the following has to occur:


1) First they need to create a standardized solution to inactivate the infectious XMRV retrovirus in our blood banks (Even though CERUS has one that works, don't count on our government to contract with them; at least not yet).
http://toadlily-gamer.blogspot.com/2010/05/wpi-and-cerus-confirm-inactivation-of.html


2) The Blood Banks's will also want to empty their inventories Before the solution is implemented because it's expensive (About $70.00 per unit I have read) That takes time as well, since it is a criminally immoral thing to do. They have to do it in a manner that doesn't draw too much attention. Like um.. this.


3) Once the inventories are emptied, the feds will wait UNTIL they have integrated the inactivation solution into all current blood inventories. Only then will they announce anything to jo-public.


The withholding of Alter's paper; and who is invited, and who is not, to the conference is just another stall tactic to give the feds time to clean up the mess the CDC caused by ignoring CFS for the last 20+ years. They Have to have time to empty inventories, make sure remaining inventories are cleaned, and all international distribution activity memos are shredded.


mmo though.

The Paper Chase

This is an ongoing edited daily post, as more and more journalists, bloggers and patient advocacy organizations learn even more regarding the really really shocking news in late June, that the CDC and the NIH/FDA papers would be 'held' back from publication (Then as if by magic, the CDC's paper Was published the next day). All those letters, emails and phone calls may have won the day for us, but time will tell, and we cannot sit back and think it's over. We all know what the CDC is scientifically Incapable of, but politically Very capable of (Hopefully for not much longer).  Please continue to write! See Stalling 101: A CDC Primer for example of a letter to send, with some .gov contacts provided at the end. There are also more .gov contacts listed under the tab above entitled CFS .gov Contact Information.


Bloggers and Advocacy organizations continue to respond and update us since Friday, July 9th, 2010. Thank God for all of you, your making a huge difference.


UPDATES:


Phoenix Rising Dr. J Interview by Cort


A Different Kind of XMRV?


QUOTE: "“In my view the CDC paper should not have been published without a proper positive control, eg patient samples known to contain XMRV. If I had reviewed the CDC paper that's what I would have asked for.” " -- Dr. Racaniello

ENDUPDATES


Hillary Johnson's Rubber meets Road


Hillary Johnson's You Can't Fix Stupid which has one of the best quotes I have seen regarding the CDC's published paper in Retrovirology:


"To be fair to them, in their paper they do admit to most of the reasons their study is rubbish."


Thanks for that whomever was quoted from Phoenix Rising. I am still giggling!


COWARDLY ACTS and EVERYDAY REBELLIONS


The Big Squeeze


XMRV Link to CFS Accelerates Scientific and Media Interest




To sum it all up (But please at least read one of the above a day if you can manage it), Dr. ALter's XMRV CFS paper, according to all the above, may be published within a few weeks uncensored in PNAS.

CDC Boilerplating 101

EDIT: Jump to the end of this for a quick NOTE on how this all may play out.
=========================================================


The CDC is looking awfully transparent during the last year imho. I mean, they are either so very much more incompetent than we knew of, and/or, they are brilliant (at least their lawyers/analysts are).  There just seems to be no reason on this earth why they would contradict the work of the NCI, CC and now the NIH and FDA. It is astounding everyone who knows anything about their history. So, are they That dumb? Imho, no. I am thinking they (The CDC) want their paper and Alter's paper are as far away from each other as much as possible. Here's why.


By holding back the NIH/FDA XMRV CFS association paper this week that confirms the association of XMRV and CFS (Ok, it was said the HHS did it, but well, yeah) and publishing their own, they can slip in and state things in their paper Intentionaly, and how it differs from Alter's (Yeah, I know, but bear with me, and it will make sense). For example, their cohorts in Kansas and Georgia. Their CDC definition and so on. Kinda like when they said this:


“The study found no association between XMRV and CFS in this population of CFS patients and controls. However, these results do not necessarily extend to other populations or locations. For example, the authors note that their findings “may not be generalizable beyond our study populations because XMRV infection rates may vary in different regions or locales.” “


Nicely served CDC. 15/love.


Do you recall this year in February when Bill Reeves, whistleblower and head of the CFS department for the last 20 or so odd years, and a virologist by trade, was shuffled off as a senior advisor to the mental health section of the CDC? Are you curious why his name is on the CDC paper released yesterday?


It's not surprising to see his name on the paper if:


The CDC will start to distance themselves from XMRV/CFS associations, because those +ve XMRV can now be 'excluded' from a CFS diagnosis. This keeps their bread winning psychological treatments of CBT and GET intact, as well as their CFS policies and guildelines. Not to mention it keeps their lawyers happy. Wicked second serve. 30/love.


It gives them (the CDC) the 'CFS' brand, which can help them through those past sticky years of completely denying, and ridiculing a biological basis for CFS. Strong angled backhand. 40/love.


Imho, watch as the FDA/NIH paper is released and see how well the two will split the XMRV and CFS illness sets. Thereby putting those of us with a XMRV positive diagnosis into a brand New classification (ME or something all brand new. In fact, I'd be very surprised to see them use ME. It's too politically dangerous). This way the CDC can keep the 'CFS' brand, and their somatic hypothesis. Air bending Big forehand. Game/Set.


Watch how the CFS department moves into the mental health section of the CDC soon'ish. See how much can be accomplished when CDC applies their Stalling 101 stragety? I also would not be surprised if another CDC department then focuses on XMRV in the CDC's New and Re-emerging Infectious Diseases Division (I may not have the exact title here correct; not enough caffeine yet, and/or Ever :+)). CDC serves again for an Ace at 142 mph. Match.


Anyone have Kenneth Feinbergs phone number?

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NOTE: If the CDC does not find any XMRV in their cohort, it validates their policy that their cohort is just CFS, and it points to those with +ve XMRV as Not part of this cohort (Again proving their point, that if you have CFS, you cannot have any other illness). It's a perfectly devious and brilliant strategy (Unless I am, wrong, and they are just that dumb to try and de-bunk the NCI,CC,NIH and FDA) that validates what they have been (criminally) doing for the last 25+ years (So their friends with the health insurance industry didn't have to pay out disability benefits, and so their Emory freinds could keep getting the easy money). So, yes, as far as they are concerned, the issue is 'dead' for them. Translation for the CDC to the world: CFS and XMRV are mutually exclusive.


The next step for the CDC we might see given this analysis?


1) Of course their independent labs will not find any XMRV in their current cohort. Nor will Alter (If they are having him try and find it)


2) Of course they will not use the +ve samples from this WPI for This paper.


2) They 'might' find and verify that Alter's paper is correct based upon a  completely different cohort. (Is Alter's paper being revised to ensure the cohort reported has nothing to do with the CDC's?)


3) Then, they 'might' get the HIV/HTLV team at the CDC to postively confirm Alter's findings, and/or conduct a Real replication study using other +ve samples, and find XMRV.


Am I giving the CDC too much credit? Or, are they dumb as to try and debunk the NCI,CC, the NIH and the FDA? IMHO, instead of trying to merge the papers into a cohesive agreed result, they are doing the opposite, making Sure the two papers are as far away from each other in results as possible. This way, the CDC's reputation, what is left of it, (and their criminal activites imho during the last 20+ years) is not at as Much risk.

Got Clout?

Seriously?, has Anyone bothered to tell the CDC authors of the XMRV CFS paper that was published today, that the more they yell "Shotgun!" to get their paper published before the FDA/NIH's, the more they are digging their own grave? The NCI, CC, and now the FDA and the NIH have found positive evidence of XMRV in CFS patients, but they are all wrong and you boys (excuse me, and girls) are right? You've been staring at your own reflections for wayyyyy too long.  You really need to take a step back and look at what's going on with your tail ends:

 


Whoa dudes, what's happened to your um... clout!

But hey, thanks for the laugh I had reading your um... *cough*paper*cough* today. And for those poor co-authors who may have thought that having their names on the same paper as Bill Reeves might be a good way to gain kudos from the CDC echelons of power? Maybe steer their careers upward? Dudes. I mean.. Damn.

And no,no,no... the commercial doesn't mean you should take out more insurance on your incredibly crippled, antiquated, not to mention ineffective CFS policies and guidelines, of which you, and your colleagues at the CDC, are the only ones left in the world that take them seriously. Come to think of it, I'd bet my last dollar Most of your colleagues at the CDC do Not take them seriously. And now I think I get why no one has bothered to tell you of your folly. Look around, and don't be surprised that no one is behind you. Run along now, and ... oops, your rattle fell off. Got duct tape?

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NOTE: A big thank you to Amy Drockster Marcus at WSJ Health Blog for continuing to cover this story (See News Picks on the right side of this blog site). Please stay with it Amy, we need you.

Stalling 101: A CDC Primer

And so it begins...

Seems the cdc for some inconceivable reason (inorite), was unable to find XMRV in CFS patients according the the WSJ:

Chronic-Fatigue Link to Virus Disputed

Go figure.

"... Scientists at the Food and Drug Administration and the National Institutes of Health, including NIH infectious-disease specialist Harvey Alter, recently finished research that came to a conclusion similar to that of the Science paper—that XMRV, or xenotropic murine leukemia virus-related virus, is found in the blood of chronic-fatigue syndrome patients."

I've been waiting for this; and I think it's safe to say, this was expected. I knew the CDC would find as many ways as possible to halt, or stall as long as possible, the findings of associations between XMRV and CFS.

"Separately, scientists at the CDC, led by microbiologist William Switzer, concluded in a paper in another journal, Retrovirology, that they couldn't find XMRV in the blood of people with chronic-fatigue syndrome, according to people familiar with the situation. "

"...In an email between scientists familiar with the situation, viewed by the Wall Street Journal, a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions, said the people familiar with the situation."

God forbid the CDC and the NIH didn't ride tandem from the get-go on this. Not surprised? Neither am I. So yeah, expect lots of waiting until 'consensus' is obtained. Can we please get someone with clout to fgure out Who lobbied for the delay of the paper(s)(Both the CDC and teh FDA/NIH were delayed according to WSJ), and then Who gave the go-ahead to publish the CDC paper that was released today (EDIT July 13,2010: Thank You Hillary!: Rubber Meets Road)? The plot sickens...

In the meantime? Please email AND snailmail (Since I don't trust emails ever find who they should in .gov) the following letter:


========================
To the Inspector General at HHS (or whomever):

I learned from the Wall Street Journal on June 30,2010, that there is conflicting results between the CDC and the NIH's research regarding an association between XMRV and CFS, and that both studies results are not being published as intended.

While I am concerned about continuity between the CDC and NIH, I do not think it requires withholding of the results. I clearly understand that the association between CFS and XMRV is in its' early replication phase by other organizations besides the WPI, the National Cancer Institute and the Cleveland Clinic, who originally authored the XMRV/CFS association in Science, October 9,2009, and I find it very unfortunate that the CDC and NIH did not work in tandem on the related studies.  

Both results being published would only bring more focus on which study was possibly accurate, and/or inaccurate depending upon how each study was conducted, accordingly given possibly different assays and cohort methodologies. Accurate and inaccurate results are both crucial to understand how to proceed with the ground breaking findings of an possible association between XMRV and CFS patients.

If it is in your power, please help release the hold on these studies, and allow publication as and when it was intended. As a patient with CFS for 17 years, I cannot help but feel this delay will grind progress on CFS to yet another halt (Please modify to represent your personal CFS experience). Please let the science keep it's momentum on this crucial subject without prejudice, and without delay.
=====================
 
Kathleen Sebelius
The U.S. Department of Health and Human Services
200 Independence Avenue, S.W
Washington, D.C. 20201
Kathleen.Sebelius@hhs.gov


Office of the Surgeon General
5600 Fishers Lane
Room 18-66
Rockville, MD 20857
Telephone: 301-443-4000
Fax: 301-443-3574


Dr. Wanda K. Jones
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of Public Health and Science
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX)
wanda.jones@hhs.gov

These are found on the CDC's website as of today. I used the vanilla address for lack of specifics found there (bld numbers, mailstops etc). I'm betting they can find them.

Rima Khabbaz, M.D.
Acting Deputy Director for Infectious Diseases
1600 Clifton Rd.
Atlanta, GA 30329

Thomas Hearn, PHD
Acting Director, National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333

Anne Schuchat, MD (RADM, USPHS)
Assistant Surgeon General, United States Public Health Service (USPHS)
Director, National Center for Immunization and Respiratory Diseases (NCIRD)
Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333


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Dr. Unger's Response to CFSAC in May, 2010.

I had read this on Friday, then forgot where i had read it. I didn't want to lose this... as it's kinda well... suspicious given what the CDC is 'supposed' to do.

At any rate, Dr. Unger stated this at teh CFSAC meeting in May, 2010.

"Dr. Elizabeth Unger asserted that her program at the CDC remained committed to theories on metabolic syndrome and stress response, despite the published link between CFS and XRMV"

orly? Are you sure that's your job?

Here's the report

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The BIG One!

An update from Hillary Johnson from her Osler's Web Blog concerning the replication confirmation of CFS/XMRV association news from the NIH and FDA.

WE ARE VALIDATED.

Now to work on the Vindication part!

But for now, I never thought I would see this. Although I kept telling myself that the CDC's higher echelons of power couldn't keep this out of the news for long, behind my eyes there was that teeny glimmer of doubt.  I am off to sit on Dr. Reeves porch now, with my little sign saying "WHAT SAY YOU NOW DR. REEVES?"

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Confirmation from the NIH on the validity of the XMRV CFS Association

It's happened. I cannot tell you all how this changes the world as we have known it for 25+ years.

"According to a press release issued by a Dutch magazine, one of the slides presented at a recent workshop in Zagreb by Harvey Alter, chief of the infectious disease section at the NIH’s clinical center, supports the link between XMRV and CFS reported last year in Science."

Wall Street Journal:
Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection?

Dutch Press Release:
Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

"Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture. "

WPI: In The News

It's beginning!!

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Quoted from Dr. Dekoff-Jones, MD., from her response to the article in the Chicago Tribune: Hope outrunning science on chronic fatigue syndrome.

"... Dr. Sax, quoted in the article, is trying to frighten people from getting the help they need to get himself off the hook. His AIDS patients have a much better quality of life than CFS patients do. Has he ever treated even one CFS patient? I bet not. What he said is inaccurate fear mongering. He says it's worth it with HIV because without treatment there is a horrible death. With CFS there is a horrible life."

Response to the Chicogao Tribune article on June 7, 2010.

Thank you Dr. Dekoff-Jones!


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One Giant Leap for CFSkind

One smart move from the AABB:

"The AABB Interorganizational Task Force on Xenotropic Murine Leukemia Virus-Related Virus reviewed the risk of transfusion transmission of XMRV by individuals with chronic fatigue syndrome (CFS). The task force presented its recommendations to the AABB Board of Directors, which approved an interim measure intended to prevent patients with a current or past diagnosis of CFS from donating blood or blood components."

Recommendation on Chronic Fatigue Syndrome and Blood Donation

Now UK, what will you do?

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The Controversy Continues...

From Medscape:

"Although several XMRV assays have been developed, "at present, there is no standardized, validated assay for the virus," said Simone Glynn, MD, director of the Blood Resources Program of the National Heart, Lung and Blood Institute (NHLBI) and cochair of an NHLBI scientific research working group formed to evaluate whether XMRV poses a threat to blood safety."

Good article explaining recurring investigations into XMRV's possible ramifications for human beings.

Controversy Continues on Whether XMRV Retrovirus Contributes to Chronic Fatigue Syndrome

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Blood Product Distribution 101

This was published in 1989. I wonder if anything has changed.

Did you know that...

"While U. S. donors are the source of more than 60 percent of the world's plasma, foreign owners dominate the business. Four of the six largest plasma companies in the United States are owned or controlled by foreign corporations based in Japan, West Germany, Austria and Canada."

and that:

"In this international market, it is not uncommon for plasma to change hands several times. Sometimes plasma brokers - middlemen who profit by bringing together those who have plasma with those who need it - are involved. Even in industry circles, brokers are considered a secretive lot. There are no lists of brokers and finding one is no small task. Locating one willing to talk is even harder. Asked to describe his business during a brief telephone conversation, one of them, Eric Jarrett, a Woodland Hills, Calif., broker said: "We sell plasma to whoever wants to buy it."

More here:

http://www.bloodbook.com/part-5.html

Couple this distribution methodology with XMRV blood supply potentials, and we've got a serious problem. Even worse than with HIV, because if I am thinking correctly, blood product brokers didn't exist nearly as much as they do today. It's like the diamond industry in Africa.  Illegal brokerage of the diamonds funded civil wars that were responsible for the mass killing of thousands and thousands of innocent people in, and around Sierra Leone. It wasn't until De Beers was under tremendous pressure that they (the diamond industry) put together a policy to eradicate the illegal process as much as possible, but in the case of the blood product brokers in the US, there is no policy, and there may be no way of knowing where the blood product comes from after it is in the hands of these brokers.

Interested yet?  We need to be, or our families, and your children are at risk with contracting XMRV.

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Blood center in middle of debate on chronic fatigue "Syndrome"

Yeah, I quoted "Syndrome" because it isn't used in the article subject.  It is such a travesty that the US cannot seem to grasp that fact, that we are NOT chronically fatigued. But why should they? The CDC has been framing this term to be used as much as possible for the last 20+ years.  Patients with cancers, and clinical depression (to just name two) can be chronically fatigued. Their bodies are under assault and it goes without saying of Course they will be. But chronic fatigue is to CFS/ME as a match is the a nuclear bomb strike. The CDC does not call Tuberculosis "Chronic Coughing Syndrome", or even call Parkinson's Disease "Chronic Shaking Syndrome". Now, since the 1990's, the "Syndrome" part of their ridiculing CFS name as been dropped by medical and journalist alike, subsetting us once again into a category where we do not belong, and as such, are denied access to proper medical support, treatment, and disability benefits. This makes the boys in the backroom of the health insurance industry squeal in glee, because with this name, they can deny any long term disability benefits.  But you all have heard me talk on this point et. nauseum, and I digress:

Along with New Zealand, Canada and Australia... now "Dr. Louis Katz, executive vice president of medical affairs at the blood center and the Scott County Health Department’s medical director"... states that:

"The Mississippi Valley Regional Blood Center in Davenport could be among the first in the country to ask its donors with the syndrome (ooo, he said syndrome! typo? =p) to consider a self-imposed ban."

Full article here

"Dr. Louis Katz, executive vice president of medical affairs at the blood center and the Scott County Health Department’s medical director, is a member of a 'federal' task force studying the issue. The task force was organized by AABB, an international association that includes virtually all the blood centers in the United States."

=====================================

So, we are just 'chronically fatigued' according to the article, and deserving of no disability benefits, or medical treatments that have been working outside our country (Search Ampligen on this site), and yet they don't want us to donate blood.  Since when are people who are chronically fatigued capable of possibly transmitting a retrovirus? O yeah, XMRV.  And so, we should impose a 'self ban' on ourselves until they have the guts to make it official.  Maybe the next Blue Moon you might expect it, but don't count on it. They don't want to start a panic, so they first get a standardized test (already available, but they won't contract with the manufacturers. Search CERUS on this site), then they will have to run all the blood bank products against it (including plasma). That is a huge expense. Instead, they 'might' try and empty as much of the inventories as possible beforehand, to bring the cost down. Bayer did this with HIV, and shipped off a huge amount of their inventories to third world countries.

"2 Paths of Bayer Drug in 80's: Riskier Type Went Overseas"

Hmmmm, anyone have a clue about how we might go about understanding Bayer's current blood products distribution activities?

So, imo, don't expect the US to be willing to make an official statement concerning banning CFS patients from donating blood anytime soon. But I am pleased at least that teh subject has been talked about by Dr. Katz. The more awareness the better.

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"What About ME?" Promotional Trailer

The second promo was released this week. A Very special thanks and **hugs** to my friends Erik Johnson and Mary Sweitzer for being in this video and representing us all; more big **hugs** to Andrea Whittemore, Dr. Peterson, Dr. Judy Mikovits, and Annette Whittemore. ALL of you spoke so many truths about what it means to be ME. Thank you. Thank you.

ME Promo 2 from Double D Productions on Vimeo.

The UK trailer can be found on the What About ME? website.

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New XMRV Diagnostic Test to Be Available by July.

Gogogo VipDx and WPI

WPI says New XMRV Diagnostic Test to Be Available by July 1; Announces Arrangements for US & European Testing

How appreciative I am for you all. You give me so much hope!

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*.* .♥¸.•'`♥ƸӜƷ Thank you!ƸӜƷ
. . * . * . * . .•*¨`*. ¸.•*¨*.¸¸.•*¨`*•


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The Evidence since 1954

This is by no means complete, as there are an estimated at least 3,500 pieces of documented literature speaking to the physiological basis for CFS/ME. But, it's a start, and cleary it states the obvious.

Documented involvement of Viruses in ME/CFS

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New Threat to US Blood Supply

From the Wall Street Journal today:

""We learned from HIV that we have to react aggressively to every next potential threat," says Michael Busch, director of the Blood Systems Research Institute in San Francisco and a member of a federally funded group studying whether the retrovirus XMRV, which has been linked to chronic fatigue syndrome, poses a threat to the blood supply.""


New Threats to U.S. Blood Supply

I notice they mention INTERCEPT by Cerus.

"The FDA declined to approve Intercept in the U.S. after a 2003 clinical trial showed a slight risk of a respiratory injury from blood treated with the system. Cerus Chief Medical Officer Laurence Corash says that in more than 75,000 transfusions in Europe there hasn't been any increased incidence of lung injuries with Intercept-treated platelets. The FDA doesn't accept European data. But Dr. Corash says the company is discussing "requirements for the size of a new clinical trial with the FDA, as well as preparing an alternative clinical study approach."

Since there was a successful trial of inactivating XMRV recently (Collaboration between WPI and Cerus), hopefully they will reconsider and look again at INTERCEPT.

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Car 54 - Where Are You??

"There's a hold-up in the Bronx, Brooklyn's broken out in fights; there's a traffic jam in Harlem that's backed up to Jackson Heights; there's a Scout troop short a child; Khrushchev's due at Idlewild...Car 54 - Where Are You?"

Ahhh There you are!! *cough*CDC*cough*

The CDC has published an article on .gov regarding an XMRV study. Although it does not focus on CFS patients, it does speak to the prevalence of controls, and how it concurs with the results of other studies with respect to a 3.7%'ish infection in controls. It references the WPI,CC,NCI study stating:

"Detection of XMRV in PBMCs and plasma of patients with chronic fatigue syndrome raises the possibility of blood-borne transmission; sexual transmission has also been hypothesized on the basis of indirect evidence"

The study concludes:

"Together with earlier observations on increased XMRV replication in RNase L–deficient cells (1,12), this finding implies that the immune system plays a role in controlling XMRV replication. It remains unknown whether immunosuppression predisposes a patient to secrete infectious XMRV from the respiratory tract or whether presence of virus might be meaningless for epidemiology in a way similar to HIV-1 (15). Future studies should address whether the respiratory tract might serve as a source of XMRV infection or whether immunosuppression might cause an increased risk for primary infection."

This 'could' be Very important in understanding why there were specific CFS related outbreaks.

Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract

It's good to see the CDC show up to the party. A bit late, BUT still. I am thinking as they move towards understanding transmission rates, wouldn't their Best bet be to use a CFS XMRV +ve cohort to do so, since the XMRV prevalence is so high in them? Will they include immunoincompetent (ahem HIV) samples inhouse? Have they tested for XMRV against their HIV sampls already?

Stay Tuned for more Car 54 action packed episodes!

EDIT: XMRV in human respiratory tract (From Virology Blog) This article is much easier on the brain to read. It puts it in a context the non-medical professionals can understand.

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NOTE: For those not nearly as old as I am, Car 54 was a TV show in the 1960's that followed the 'madcap' adventures of two police officers stationed at the 53rd precinct in the Bronx.

From Wikipedia: Car 54