Failure to Thrive

Failure to Thrive's Last Post

2010-10-31T09:32:00.012-06:00

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

2010-10-11T10:18:00.003-06:00

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

2010-10-11T09:58:00.001-06:00

"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

2010-10-11T09:31:00.003-06:00

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

2010-09-29T10:51:00.000-06:00

"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

2010-09-27T09:35:00.005-06:00

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+

2010-09-15T09:58:00.022-06:00

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

2010-09-14T09:26:00.001-06:00

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

2010-09-11T09:49:00.006-06:00

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.

2010-09-10T08:30:00.007-06:00

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

2010-09-07T11:55:00.003-06:00

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

2010-08-24T10:44:00.014-06:00

"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

2010-08-22T10:35:00.019-06:00

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

2010-08-17T09:14:00.004-06:00

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

2010-08-12T11:30:00.018-06:00

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

2010-08-11T08:58:00.000-06:00

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

2010-08-03T08:53:00.006-06:00

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

2010-07-31T11:25:00.002-06:00

"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)?

2010-07-30T16:30:00.003-06:00

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

2010-07-30T13:32:00.002-06:00

"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?

2010-07-24T12:12:00.015-06:00

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

2010-07-09T10:52:00.011-06:00

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

2010-07-02T10:58:00.016-06:00

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?

2010-07-01T17:34:00.035-06:00

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

2010-06-30T11:13:00.023-06:00

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.

2010-06-27T08:01:00.002-06:00

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!

2010-06-24T16:26:00.000-06:00

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

2010-06-24T11:51:00.000-06:00

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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2010-06-22T08:58:00.000-06:00

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

2010-06-21T09:33:00.000-06:00

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...

2010-06-21T09:24:00.001-06:00

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

2010-06-17T10:25:00.004-06:00

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"

2010-06-17T09:25:00.001-06:00

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

2010-06-05T07:45:00.003-06:00

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.

2010-06-03T16:30:00.000-06:00

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

2010-05-28T08:07:00.000-06:00

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

2010-05-25T07:30:00.003-06:00

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??

2010-05-19T08:06:00.026-06:00

"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

XMRV on Tour!

2010-05-18T09:08:00.000-06:00

Unconfirmed sources tell of a late May tour by Dr. Peterson, Medical Director of WPI, to Europe and Sweden/ Finland.

XMRV - a novel retrovirus: What Doctor Should Know about it.

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WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System

2010-05-18T08:32:00.001-06:00

Astonishing positive news about the blood bank safety issue.

WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System

Although, the article stated the recommendation and presentation will not be put before the AABB until October. Hopefully, they will address it sooner if we keep this alive in the media.

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Kenneth Feinburgh, we need you!

2010-05-17T08:17:00.000-06:00

Who else is better suited to represent us for compensation from the health insurance industry? No one.

Compensation Czar Kenneth Feinberg

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Links to May 10ths 2010 CFSAC Speakers

2010-05-15T10:28:00.000-06:00

Annette Whittemore

On video

Mary Schweitzer

All public speakers

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X Rx Blog

2010-05-15T10:08:00.003-06:00

Harvard/Einstein educated, and at one point, Assistant Director of the ED and Director of Urgent Care at Santa Clara Valley Medical Center. Dr. Jamie Deckoff-Jones blogs about her and her daughters' XRMV treatment using HIV Anti-retrovirals.

X Rx

I plan on referencing and steering my infectious disease doctor to her informaion. What's kinda sad, is that I HAVE to steer her towards anything conncerning XMRV.

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Where we aren't, anymore.

2010-05-12T11:24:00.007-06:00

Today is May 12th. It is International CFS/ME Awareness Day.

I have watched it come every year for appx. 15 years of the 17 I have been ill with CFS/ME. I try to be involved, but sometimes it is just futile. I try to write letters; send emails. Usually, I end up watching it leave with a sense of defeat, and paying acutely and severly for the expended energy I seemingly used in vain.

Last year on October 9, 2009, Science published a study done between the WPI, CC and NCI. It detailed an association between CFS/ME and XMRV. There's so much information on this blog about this already, so I am by-passing the details.

For me, saying that the results of this study marked a watershed ping on the CFS/ME horizon of possibilities is an understatement. IMHO, this discovery has the potential to sever our being held hostage in an endlessly bleak and unfathomable CFS/ME nebula. I feel we've never been closer to an answer, and possibly treatments. And if we can't make the world aware of us as much as we want today?, my wish is that all PWC's (Patients with CFS/ME) ON THIS PLANET are aware of what has changed towards the positive for us since October 9, 2009.

So, at 11:21 am, on this day of May 12th, 2010, I proclaim that we are on a New pilgrimage. We are rising up. We are strengthend with a restored covenant of new actualities; intent on manifesting our dreams of thriving in health and abundance, as is the right of every human. Turn Left HERE! Where we were has been blinked out of existence. It's in the stars people.

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Want to help? Visit the Whittemore Peterson Institute and donate. ANY amount helps.

Positive ‘XMRV-study’ a matter of time

2010-05-04T08:11:00.001-06:00

A dutch press release during the multi-day 'Centennial Retrovirus Meeting' conference in Prague.

Kick-back from Dr. Coffin on the XMRV/CFS non replication studies performed.

Can I just say, awesome.

ESME on Dutch Press Release

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Dr. Bell makes a personal appeal to fund WPI's research with XMRV/CFS

2010-05-04T08:05:00.001-06:00

Even the smallest donations are appreciated. Please help!

Taken from WPI's web site

=====================
David S. Bell MD, FAAP
Lyndonville, NY 14098
May 1, 2010

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind out its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Let's see, that’s…I need a calculator. May 12 is our day. Let's do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.

Thank you.

David S. Bell MD, FAAP

1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

Lightning Strikes Children: An Expose by Khaly Castle

2010-05-04T07:55:00.001-06:00

"Will we stand by and watch lightning strike children?"

Well said. Pleaase read this expose. They are going to experiment on 90 children with CFS/ME with behaviour modification techniques. If they HAVE to experiement, why can't they experiement on adults?

Khaly explains what they will do to them.

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Dr. Myhill Banned for Prescribing B-12 and Magnesium

2010-05-01T07:34:00.002-06:00

Dr. Sarah Myhill has been an ME/CFS advocate, and care provider for 30 years. Her focus is on Ecological Medicine, and she states that:

"...Ecological Medicine. 'is' ...how I treat various conditions, the sort of diets that I use and the lifestyle changes that I recommend and the micronutrient supplements to take in order that they can sort out their own medical problem."

She has treated those whom have been told there is 'Nothing more I can do', by their primary doctors, as in the case of Patricia Chell. She was told they could do no more for her, and she had cardiac heart failure. Please watch her story here:

Private Powys GP banned from prescribing drugs by GMC

Basically, Dr. Myhill is being banned because she gives B12 and Magnesium shots. And because she helps ME/CFS patients.

Please visit Dr. Myhill's web site, and show your support. Please download her 'free' information before she has to take it down as mandated by the UK GMC (General Medical Council). Yes 'free', and that's the way she works. We cannot believe how she is being treated. Mostly due to the fact imho, that she treats ME/CFS patient (and exceptionly well), when the UK equivalent of the CDC treats ME/CFS as a psychological illness (We have abnormal illness beliefs; although there is published literature stating otherwise and has been circulating for 20+ years.) Instead of treating ME/CFS patients with dignity and support, they instead back down doors in the UK; evict children with this illness to a mental hospital where they are subjected to dangerous exertion levels. One woman died after this 'treatment'. They also took a child and Threw her in a swimming pool to 'prove' she was faking. She almost died. And they say Dr. Myhill "... is a potential risk to patients??"

The UK GMC is Unbelievable. Criminal.

Dr. Myhill's web site

Please show your support by signing Ruth Myhill's (Dr. Myhill is her 'mum' :+))

ipetition

Join her facebook support site.

Thank you for supporting her!

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European ME Alliance calls for Europe-wide ban on ME/CFS blood donors

2010-04-29T07:25:00.000-06:00

Quote:

"After Canada, Australia and (in all probability) New Zealand have prohibited people who have been diagnosed with ME/CFS from donating blood the European ME Alliance (EMEA) has written to European health ministers and Chief Medical officers requesting that a similar ban be placed in European countries."

Read entire article here:

EMEA Calls for Blood Donor Bans

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Fed's Ramp Up on XMRV Study?

2010-04-24T12:06:00.006-06:00

First, there was this article from the WSJ on April 4th, which got through my 'has merit to post' filter. It discussed the isues surrounding blood safety and XMRV, and at the end, it discusses major objectives of the XMRV working group:

"The federal working group's project has three phases. First, labs at six participants—including the FDA, the National Cancer Institute, the CDC, and the Whittemore Peterson lab—are using a panel of blood samples to try to establish which of the labs' tests are sensitive and reliable enough to find XMRV in the blood. Results are expected in a few weeks.

In the second phase, also launched, a panel of around 350 different blood samples developed by Dr. Busch's team will be sent to four different labs. Some of the samples are from chronic fatigue patients known to have XMRV. Others from healthy donors have been spiked with the virus or have tested negative. All the samples are blinded, and the study will see whether the different labs can agree on XMRV positive status for chronic fatigue patients.

"There is a balance to what we are doing," says Simone A. Glynn, branch chief of transfusion medicine and cellular therapies at the National Heart, Lung and Blood Institute and chairperson of the XMRV working group. "You do not want to transfuse an infectious agent that causes problems. But you do not want to take blood out of the system that is not causing any problems."

A third phase may be launched later, using frozen specimens in federal repositories dating to the 1970s. These repositories link donors to recipients and will allow researchers to see if XMRV was transferred in transfusions and help determine prevalence in the past as well as today, as well as geographical clusters or associations with age and gender.

Now, there is this article from Cort of Phoenix Rising from April 9th:

XMRV’s Big Test Has Begun: The Fed Study Ramps Up

He details what is involved in those phases.

Halleluiah.

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The Devestation of a Disease - A Lifers Statement

2010-04-24T09:21:00.002-06:00

Her story speaks to my own, and over 1-3 million others who suffer from CFS/ME. Thank you Lisa for sharing your experience, and Khaly Castle for hosting it.

Khaly, from CFS UnTied:

"This was written and posted by Lisa Simpson, who gave generous permission for us to share it here. While government obfuscates and pontificators pontificate, this is what’s happening to an entire population of dreadfully sick people."

The Devestation of a Disease - A Lifers Statement

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Anthony Fauci: How not to be a scientist

2010-04-19T09:49:00.003-06:00

This is a re-post from 9/23/2009, written by Hillary Johnson. Anthony Fauci has been the director of the NIAID since 1984. It's just outrageous to me that men such as Fauci were/are continued to be allowed to speak on the behalf of PWC's.

Quoted from Hillary Johnson's re-post on Osler's Web: Anthony Fauci was....

"The person who advised NIH director Harold Varmus in 1999 to move “chronic fatigue syndrome” out of NIAID and into the dead zone of the ineffectual and unfunded Office of Research on Women’s Health at NIH, a stunningly irresponsible and cynical decision. Fauci made this move on the heels of a General Accounting Office report critical of the NIH's history in "cfs.""

PLEASE read the rest of the re-post.

RE-POST: Anthony Fauci

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XMRV Found in Dutch Patients

2010-04-17T09:43:00.002-06:00

From WPI Notes on Facebook:

"English Translation for Ortho web post by Toine de Graaf

1. This is not approved by the author, but was translated by Monique Drost and edited by Heidi Bauer. All effort has been made to stay true to the intention of the author while making sentences grammatically correct in English.

2. Ms. Drost changed the name of the place Nijmegen into UMC St. Radboud (the hospital that facilitated this research), because she would have to use Dutch conjugations like Nijmeegs, Nijmeegse and Nijmegen, and she felt that would be a bit confusing for readers.

*********************************************************

Ortho
- Orthomolecular magazine

Ortho no. 2, sent today to subscribers, contains once again an article on the retrovirus XMRV and the relationship to ME/CFS. However, recent developments couldn’t be included in the article, hence this web publication.
By Toine de Graaf

Latest news – ‘UMC St. Radboud’s’ blood XMRV-positive after all

Gendringen, the Netherlands – April 16th, 2010. Researchers from the UMC St. Radboud announced in February that they didn’t find the XMRV virus in the blood of Dutch Chronic Fatigue Syndrome (ME/CFS) patients. However, they left out that American researchers did find the XMRV virus in blood samples, taken from the same patients.

This is concluded from a letter that Annette Whittemore, director from the Whittemore-Peterson Institute (WPI) in Reno, sent on Monday, April 12, to Dr. Myra McClure (1). Dr. McClure is a professor in retrovirology at the Imperial College, London, and one of the authors of the first negative “replication study” for XMRV contamination with ME/CFS (2). In her letter, Whittemore invited McClure to co-operate with the WPI to research XMRV. She also reveals some information on the other two negative replication studies that have been produced so far, including the UMC St. Radboud study.

Email correspondence

The experimental virologist Dr. Frank van Kuppeveld from UMC St. Radboud and internist doctor Jos van der Meer didn’t find a trace of XMRV in the frozen blood of 32 Dutch CFS patients, taken in 1991 and 1992. Also, in the blood of 43 healthy control subjects they didn’t find the retrovirus. They published their findings online in the British Medical Journal (3), late January.

However, in her letter, Whittemore points out that the WPI, at the request of van Kuppeveld, has tested some blood samples from the Dutch research cohort before the study at UMC St. Radboud was completed. The WPI found traces of XMRV in those blood samples. Whittemore claims she possesses over email correspondence, which proves that van Kuppeveld was informed about these WPI research results before he published his negative study. However, in his scientific publication, no word is spoken about the co-operation with WPI (3). The redaction at Ortho has requested a copy of the email correspondence with UMC St. Radboud from Annette Whittemore, but this request has not (yet) been honoured.

Furthermore, Whittemore writes in her letter that van Kuppeveld has asked WPI for the reagents and a positive blood sample to determine if his test procedure was able to detect XMRV in positive blood. The WPI met that request. In her letter, Annette Whittemore questions why he didn’t use these materials in his research.

Confirmation

Annette Whittemore’s letter raises a lot of questions concerning the UMC St. Radboud XMRV study. The most pressing question is whether Van Kuppeveld can confirm WPI’s findings. And if so, how many blood samples were sent from the Dutch research cohort to Reno, and how many positive samples did WPI find? And last, but not least, why did the UMC St. Radboud researchers keep silent about all of this in and around their research publication in the British Medical Journal?

Last Wednesday, the redaction of Ortho called virologist van Kuppeveld after emailing him Annette Whittemore’s letter. During the call, he declared he had never seen that letter before. Van Kuppeveld also said he wasn’t able to respond on such short notice. “I will first have to study the letter, and at least discuss this with my colleagues, who might be out of the country right now,” he said.

However, after some urging, van Kuppeveld confirmed Whittemore’s findings. He says that the case is slightly more complicated then the letter assumes. According to him, one or more of the 43 healthy control subjects from the UMC St. Radboud cohort has been positively tested on XMRV by the WPI. In conjunction with the findings of van Kuppeveld, this has raised some questions concerning the reliability of the WPI methods. Besides this, he has also stated that he had requested more samples from WPI, but has never received more than one XMRV positive sample.

Seven blood samples

Searching for answers, we contacted Dr. Judy Mikovits yesterday. She is the research director for WPI and leader of the XMRV research. She gave us several answers during a telephone interview. “Frank Van Kuppeveld has sent us seven samples”, Mikovits said. “They were numbered 1 to 7. It was about cDNA, that he had made out of RNA”.

WPI tested these seven samples with advanced PCR techniques in a closed system, so that contamination was impossible. Three samples appeared to be positive. After they reported the positive numbers to UMC St. Radboud, a message was returned, saying it concerned 2 patients and one control subject. For Mikovits, this result was expected. “We never were informed how many control persons there were on those seven samples, but two positives in seven is approximately what I expected. I didn’t count on a 100% score, especially not with PCR.

That one control subject has been found positive by WPI was no surprise to Mikovits. “It totally depends on where you get the blood.” At BMJ the UMC St. Radboud researchers have declared that the control samples were taken from people from the same environment as the patients. “The positive control subject is no surprise if it concerns family or a care taker. Control subjects that come with the patients to give blood we call contact-controls. Some of these people might be infected.”

It is a fact that XMRV has been discovered with healthy persons. With WPI’s own Science Research, in a group of 218 healthy control persons, showed that 8 people had a positive XMRV test (3.7%) (4).

No replication

Judy Mikovits and her colleagues are disappointed that the UMC St. Radboud research group has stated nothing about the co-operation with WPI in the BMJ publication. “During a month, we contacted each other at least every 3 or 4 days,’ she said. “Material went back and forth, including co-operation agreements, signatures.” She felt van Kuppeveld was keeping her on her toes. “He was very strenuous and kept asking whether I had received, tested or looked at stuff.”

About a week before the BMJ published the UMC St. Radboud online, the communication fell silent. “That was after I had sent the positive results,” said Mikovits. “I considered it to be good news. You’ve got something to work with. But Van Kuppeveld didn’t consider it good news, because they didn’t find anything. His message was, on your side, there must have been contamination. Even though I got his material, I was speechless. That was the end of our contact. A week later their publication followed.”

Mikovits finds it unbelievable that the UMC St. Radboud researchers haven’t used the material they got from WPI in any way. They did claim to have done a replication study. “We sent them antibodies, positive serum and positive DNA,” said Mikovits. “Van Kuppeveld could have cultivated his samples, just like we did in our Science study. They could have tested their plasma for antibodies and they could have used our reagents to search for proteins and that kind of stuff. But they didn’t, and have also mentioned nothing about the possibilities to do it. We would have wanted Van Kuppeveld to report all the data. If there is a difference in opinion or a misinterpretation, you can look at it together. They could have adjourned the samples, and worked together with us. But you can’t just create the appearance to the outside world that nothing happened.”

In retrospect, van Kuppeveld and his colleagues only were interested in the PCR technique, while Mikovits assumed that at the UMC St. Radboud the entire Science study would be replicated. “I had no idea he didn’t want to do the rest of the research. That totally surprised me.“

Silence

The WPI kept silent until the beginning of this week. Mikovits suspects that Annette Whittemore was triggered by the statements Dr. Myra McClure recently made on television, where the British retrovirologist disregarded the meaning of XMRV with ME/CFS. After this, Whittemore decided to enter the arena with this letter. “For a long time we thought the best way to deal with this was to continue with the research and forget about the lies. What else can you do? We got seven samples, we did our jobs and reported honestly what we found.”

Mikovits confirmed that van Kuppeveld requested more samples. “I wanted to send him more, but what would he have done with it? Find out they were negative and say bad things about it? Mikovits is determined to walk the XMRV-route further, and she sounds more motivated than ever. “We’ve isolated a virus, and we displayed from a hundred people how their immune system is reacting. Did you know that there is no immune response to a contaminant? The patients obviously are infected with a virus.”

Mikovits isn’t the only one that takes XMRV seriously. Previously this month it was announced that in Canada people with ME/CFS aren’t allowed to donate blood. Canada is the first country in the world that has taken this precaution.

1. Whittemore A, Dear Dr. McClure, April 12th 2010 (www.wpinstitute.org)
2. Erlwein ), Kaye S, [..], Cleare A. Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 2010; 1e8519
3. Van Kuppeveld FJ, de Jong AS, [..] van der Meer JWM. Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort. BMJ 2010 340:c1018
Lombardi VC, Ruscetti FW, [..]. Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients withCFS/ME

Further information (in Dutch):

http://www.ortho.nl/bestanden/artikelen/ortho102laatstenieuwsxmrvb.pdf

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Ontario Makes CFS an Official Neurological Illness

2010-04-15T16:58:00.004-06:00

Never thought I'd see this, and I quote:

ME/CFS Given Official Recognition by Ontario Government!

"This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795.

'Chronic Fatigue Syndrome' has been given the OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!"

It must have been the...

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*.* .♥¸.•'`♥ƸӜƷ Positive Pixie Dust! ƸӜƷ
. . * . * . * . .•*¨`*. ¸.•*¨*.¸¸.•*¨`*•

Edit: Iirc, I think I heard this is not a recent development, but happened within the last 2-3 years. Even so, It's still encouraging to know.

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Annette Whittemore, CEO and Founder of WPI, responds to Dr. McClure

2010-04-13T11:41:00.050-06:00

Remember this?

Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

It was the first published article from the UK announcing findings in PLoS ONE regarding a XMRV/CFS research 'study'. It was a very disappointing report and contained errors that even a brain addled PWC as myself could spot. We all knew it, and I was dumbfounded why it was even published? Why would any scientists want to attach their names to something so technically impaired? It just did not make any sense. Their study results were:

Received: December 1, 2009; Accepted: December 4, 2009; Published: January 6, 2010

See anything unusual here? The WPI, the CC and NCI published their XMRV in CFS patients discovery findings in Science on October 9, 2009 after a rigorous peer review of 6 months.

So, we were expected to believe that they (Dr. McClure and UK team) somehow managed to 'not verify' (I will not use the 'replicate' word, as they failed to follow the steps required for an authentic replication study) the discovery of XMRV in CFS patients after less than two months? Then, it was received By PLoS ONE on December 1, and accepted December 4th? So... yeah. A peer review of 3 days? Really? Politics aside, this was just such a technical failure from the start it should have never even been considered for publication.

Yesterday, WPI addressed the 'science' behind the UK's published study. I received authorization to post this correspondence from Annette Whittemore, CEO and Founder of WPI, to Dr. McClure. You can also find it here, on the current news page on WPI's website.

NOTE: If you have already read the letter, jump to the end of this post for a quick conclusion by this blogger.

============================================
April 12, 2010

Dear Dr. McClure:

On behalf of the Whittemore Peterson Institute in Reno, Nevada (“WPI”), I am writing you today to ensure that there is direct communication between WPI and your research team. You may share this letter with others that you deem appropriate, and I will do the same by sharing this letter with other interested parties in both the United States and the United Kingdom.

On January 6, 2010, you reported in PloS One that you failed to detect xenotropic murine leukemia virus-related virus (“XMRV”) in ME/CFS patient samples. In that publication you reported the following conclusion, “[b]ased on our molecular data, we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of ME/CFS, at least in the U.K.” You subsequently made the following statement in your commentary regarding the Netherlands study in the BMJ, “….van Kuppeveld and colleagues provide the additional information reported at a conference last year that the patients in question came from an outbreak of chronic fatigue syndrome at Incline Village on the northern border of Lake Tahoe in the mid-1980s.”

This statement about the origin of the 101 patient samples is untrue. The patients in the Science study were well defined in the paper as having CFS by the Fukuda and Canadian consensus definitions of ME/CFS. More importantly the patient samples did not come from the “Lake Tahoe outbreak” as you assert, but rather from patients who had become ill while living in various parts of the United States.

We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the completion of their own studies, as they requested. We have email communication that confirms both doctors were aware of these findings before publishing their negative papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive patient sample to determine if his testing procedures could in fact detect XMRV in a positive blood sample before he published his paper. We wonder why these materials were not used in his study which also failed to detect XMRV.

One might begin to suspect that the discrepancy between our findings of XMRV in ourpatient population and patients outside of the United States, from several separate laboratories, are in part due to technical aspects of the testing procedures.

To help identify the possible reasons for the discrepancies in detection of XMRV, WPI would like to send you known positive patient samples with controls, from the United States in an appropriate number, along with WPI reagents, so that we can help you determine whether your testing methodologies will accurately detect XMRV in a clinical sample of blood. In addition, WPI would be willing to test a like number of samples from your patient cohort to see if our researchers can detect XMRV in those samples.

This critical exercise would help resolve the question of whether you are using all of the appropriate techniques necessary to detect XMRV in a patient’s sample. If your tests are able to detect XMRV correctly in the known positives, then the debate can appropriately center on whether we can identify the differences in the patient cohorts which have been the subject of various studies. It is in this systematic manner that we all may help to move the science forward; instead of continuing to debate whether or not ME/CFS patients in Europe are infected with XMRV.

It is also important to note that our initial study was not intended to prove causality of ME/CFS, but to report a significant association between patients who had been diagnosed with ME/CFS and XMRV. We believe that there exists compelling evidence to spur additional scientific review, especially in light of the fact that our team of researchers also discovered XMRV in the blood of 3.7% of our non contact controls.

I look forward to your timely reply.

Sincerely,

Annette Whittemore
Founder and CEO
Whittemore Peterson Institute
==================================================

Dear Dr. McClure,

I second the motion that you respond to Annette in a timely manner. And please reconcile the technical and conclusive issues you previously had, by working directly with WPI.

EDIT:

I just finished listening to The Health Report's interview with Dr. McClure. She states her reason for rushing to publish was due to the fact that 1) A 'lab in the US' was charging a very high fee for their XMRV test, and 2) that there were reports of some (Doctors? Clinics?) offering anti-viral treatments to CFS patients. So, if I get this right, she wanted to make sure we didn't 'buy into' the WPI's study, because she was concerned for our wallets?, and that unsubstantiated anti-viral treatments being offered (and again, I ask WHO?) might harm us? Well, that's just... so noble. Can I just lol here?

Yes, there was a questionable lab that entered the scene about 1 week after the Science report (Co-Diagnostics, and they are no longer on the internet). But I would really like to know where she gathered the information concerning Anyone who was 'offering' anti-viral treatments for CFS patients? And why did Dr. McClure suddenly become So attentive to the plight of PWC's? Why was she all of a sudden so thoughtful, so concerned as to risk her reputation by publishing something so... wrong? I DON"T GET IT!! Some one Please explain it to me!!

As a PWC since 1993, I can tell you that PWC's are not easily persuaded by snake oil salesmen. We are not your typical patients who want to be spoon fed. We have had to defend ourselves for so many years, and have been received with such disdain and complete dismissal just for being proactive in understanding how we can help ourselves, that we are always wary. We also weigh the costs and risks very carefully before deciding on any lab test, and/or embarking on Any treatments. And we rely on scientific accuracy when we do weigh the risks. What we NEED from You, Dr. McClure, is accurate science, WITHOUT EXCEPTION OR BIAS, so we can make the very Best decisions towards increasing our quality of life, and/or increasing our life span. We do not need you using your 'concerns' as a basis for publishing unsound science. And if Dr. McClure was implying that the XMRV lab test offered by VipDX was out of line monetarily?, she might think about researching where the XMRV lab test proceeds from VipDX go. They go back into WPI for research.

Now, given what I know to be true about WPI and VipDX, they are the ONLY lab I would trust with my XMRV testing. Certainly not a retrovirus lab where instead of doing the level of research required for meaningful accurate results, they instead justify rushing the wrong data to publication that has the power to affect Millions of people, because they are 'concerned' about patients with CFS being taken advantage of. Yeah, That makes sense. Please do not concern yourself with us again Dr. McClure. That kind of concern we can do without.

And a special thanks to Annette Whittemore (and her family) for her generosity, her dedication and her never ending focus on the details that Do matter.

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Transcript quotes from Dr. Coffin about 2010 CROI

2010-04-10T10:22:00.003-06:00

CROI = Conference on retroviruses and opportunistic infections

Dr John Coffin - Recent XMRV remarks at CRIO 2010:

Coffin: "That new virus is called XMRV. It was first described in some cases of, associated with some cases of prostate cancer about three or four years ago but it really burst onto the scene last fall when a study reporting that it was associated with many cases of in a cohort of patients with chronic fatigue syndrome. The study reported detecting the virus in about two-thirds of the patients in this particular cohort. Potentially a very exciting result because for any number of reasons; one is because chronic fatigue syndrome has been a very mysterious disease, the other is that the association of prostate cancer was a little unsatisfying in some ways -- that I can get into if you want. But this is very clear evidence that this virus was in fact infecting people and also that in both the prostate cancer study and this one there was a significant fraction of normal controls, uninfected people showed, also showed signs of infection with this virus. The number being on the order of 4% in the two studies, which if you take that over the whole population of the United States or the whole population of the world that actually turns out to be a very large number of infected individuals. More, much more, for example in the United States than the total number of HIV infected individuals, and so the possibility of this virus might be associated with this or perhaps other kinds of diseases is a very real one and one that really needs to be investigated and nailed down."

Complete transcript and video can be found at:

http://www.medpagetoday.com/clinical-context/HIVAIDS/19456

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

A Welcome Ban on ME/CFS Blood Donations: by Parvofighter

2010-04-09T09:17:00.006-06:00

If you want one place to go, to illuminate news surrounding XMRV and CFS/ME, then Parvofighter has it:

A Welcome Ban on ME/CFS Blood Donations

And here is the video he references, although I am disappointed Dr. Judy and team and WPI was not mentioned in the video. I guess we should be used to that by now.

Please join the cause!

XMRV Global Action

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Canadian Blood Service now Bans CFS Patients from Donating Blood

2010-04-07T08:54:00.002-06:00

Virus leads Canadian blood service to ban certain donors

Canadians = smart. They learned their lesson the hard way:

Tainted Blood Scandal

You know how the U.K. addresses the potential blood XMRV issue? Their new policy states that if an ME patient walks in to donate blood, the nurse will ask "How are you feeling today?" and if the donor says ok! (which probability = zero), then they can donate blood. Yeah, I know right?

There is a new potential serology test for XMRV in the US:

Novel XMRV retrovirus diagnostic test developed
Based upon what happened with HIV, I predict that the serology test will be performed by the corporate private blood providers Before the public is notified of the blood safety concerns. 1) This will calm the general public to know blood products are now 'safe', but seriously, it will give the blood providers time to empty their infected inventories to third world countries. Just what Bayer did. Here's the NY Times article:

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

And more from here:

Bayer Documents: AIDS Tainted Blood Killed Thousands of Hemophiliacs

Isn't it wonderful when blood safety turns into big business?

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

New Phase III Ampligen Trial at Hunter-Hopkins Center

2010-04-06T09:16:00.005-06:00

Dr. Lapp at Hunter Hopkins, NC and Hemispherx Biopharma are conducting a new government trial of Ampligen. Government ID = NCT00215813.

Trial Information

They are currently seeking participants. In order to be a participant, PWC's first need to have an appointment with Dr. Lapp at the center in Charlotte, NC. The cost of seeing him for about 2 hours is appx. $700.00. Participants would need to be able to afford the airfare, his fees, and housing during the trial. Not an inexpensive venture. Further information:

"An Open-Label Study of Poly I: Poly C12U (Ampligen®) in Patients with Severely Debilitating Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME). The FDA approved the study for cost recovery. Patients enrolled in the study are responsible for costs related to the therapy, e.g., drug cost, infusion cost, cost of supplies, diagnostic and other laboratory testing."

Also, from Dr. lapp's website: Details of costs.

Ampligen Trial

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Potential Risk to Blood Supply Probed

2010-04-05T09:42:00.005-06:00

UPDATE: A followup article in the WSJ on Thursday, April 8th.

From The Wall Street Journal today (Monday 5, 2010):

Potential Risk to Blood Supply Probed

We are leaving thoughtful comments. A pretty well rounded article, but they (Mass media) continue to use the word "Replication" instead of "Validation". The difference is night and day in the biomedical world. The Whittemore Peterson Institute explains why here:

February 18, 2010: WPI is aware of the recent UK study that was unable to detect the presence of XMRV in any CFS patient samples.

Reading it again, I do think they spelled out the fact why the replications may not have worked. kudos wsj. I wish my brain would pick up these things the first time around.

"Labs in Europe reported earlier this year that they haven't been able to replicate the XMRV findings in patients with chronic fatigue syndrome or prostate cancer. And public-health experts say a key issue in sorting out the disparate findings is to reach agreement on tests that are sensitive and reliable in identifying XMRV in the blood."

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

A Light in the Darkness?

2010-03-27T18:07:00.006-06:00

In January of this year, I wrote the article "A Picture is Worth a Million PWC words" here on my blog. It focused on the amazing CFS study performed by Dr. Alan and Kathy Light and team, as reported in "Blood Biomarkers for CFS". For those who may have missed it, here's a fast recap.

"According to Blood Biomarkers for CFS: A Light at the End of the Tunnel, "Alan R. Light, PhD, and his team at the University of Utah Health Sciences Center have identified genes that increase in activity following moderate exercise." The discovery was published in Journal of Pain. "

And here is the remarkable slide showing gene expression activity, following moderate exercise exertion, in the control group (Top of slide), the CFS group (Middle), and the bottom slide, although not apparent here, represents an MS group, and overlaying it, another control group, with the exercise increased markedly, to see if they could reproduce what the PWC data was revealing. The results were, and still are astonishing, and vindication for all PWC's who experience dismissal, ridicule and disdain for trying to explain to the world how ill we are.

(Click on the image to enlarge, and for further details see my original blog posting I mention above.)

So now, Cort from Phoenix Rising (and if I have failed to do so, let me just say Thank you Cort! You are another one of the titans of CFS advocacy that we need so very very much!) has written a followup on what is currently happening in Utah today, as a result of the Light's study, and the XMRV association with CFS/ME discovery by the Whittmore-Peterson Institute, the National Cancer Institute and the Cleveland Clinic.

"We had heard that the three dozen or so people who participated in the Light’s fascinating exercise study were brought back to get tested for XMRV. What we didn’t know is that that study has recently been expanded - greatly. Since one thing researchers do not do is repeat negative studies, the only logical conclusion we can draw is that enough CFS patients tested positive for XMRV to make a greatly expanded and obviously much more expensive study worthwhile."

There may be some opinion of what this means on Cort's part, but he is Not without the facts to back it up, or he just wouldn't have 'gone there'. So, I invite you all to read his latest publication. It's good news, and so very welcome to us who have shouldered the stinging brunt of the quick and dirty so called 'replication' studies from the UK, and the Nederlands.

A Light in the Darkness: Good News Ahead for XMRV?

Thank you so much Cort, for this very encouraging followup!

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

XMRV is infective in primates and produces an immune response

2010-03-23T13:45:00.001-06:00

"XMRV is infective in primates and produces an immune response. The presence of XMRV in EPS and effect of semen on infectivity suggest sexual transmission. The presence of an ARE and the stimulatory effect of androgen suggests that XMRV integration into host DNA could impart androgen stimulation on cellular genes, serving as a potential oncogenic mechanism."

See entire abstract here:

Characterization of XMRV in prostate cancer

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Invest in ME: Letter from America

2010-03-22T11:18:00.001-06:00

XMRV - The Story is Just Beginning by Dr. Mary Schweitzer

From Invest in ME:

"Dr. Mary Schweitzer from Delaware, USA, was a tenured professor of history before becoming ill with ME in 1994. Mary has been an active and very passionate advocate for people with ME for several years writing articles and taking part in the CFSAC (Chronic Fatigue Syndrome Advisory Committee) meetings to allow the patient's voice being heard."

Another article from Mary that pinpoints where the truth, and non-truths lie.

Grass Roots Advocacy; by Khaly Castle

2010-03-22T10:24:00.004-06:00

Watch out for the lawnmower!

See all comments as well for further information. And yeah Khaly, a big thanks to Erik Johnson as well from me, for still speaking about his experience, and sharing his comprehensive personal knowledge on what happened in 1984 in Incline Village, Nevada. But I want to thank you again Khaly, for being able to express so damn well in your articles, what I cannot.

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Letter to the U.K. Secretary of State for Health, from Invest in M.E.

2010-03-16T10:47:00.001-06:00

Written and submitted by The Chairman and Trustees of Invest in ME

Myalgic Encephalomyelitis and Blood Donations

What a deliciously accurate letter based on the U.K.'s policy about people with M.E./CFS donating blood. It lifts my heart to read letters such as these.

There's something about Mary... and Khaly

2010-03-08T12:18:00.017-07:00

Mary Schweitzer that is. And Khaly of CFS Un-Tied. There are many others that on a daily basis I gather strength and solidarity from their continued struggle to help us all be aware of the truth. But these two I want to specifically hug from afar today. Thank you for your insights, your hard work to get the facts recorded and published, and then to make them accessible to all PWC's (Patients with Chronic Fatigue Syndrome) and the world.

Every day, my day starts out pretty much the same. The questions I ask myself do not vary so much. "Can I sit at the computer today?" "Will I be able to absorb any new CFS related scientific and medical political information that may be on the WPI facebook site? "If I can actually absorb it, will I have the brain power enough to comment on the new releases and articles?" Will I remember any of it after lunch?" "If I can perform these tasks, will I be banished to the couch for the remainder of the day for exceeding my limits, with fatigue so bad I cannot hold up the remote control for the tv; or just hold the phone (I never answer on bad days, unless I want a near death experience)" Experience says yes. However, it's just so critical that I stay up to date on what is happening, that I make a silent agreement with the CFS demon that I am prepared to exist uselessly on my couch for the rest of the day if I can just mash a few keys for the CFS defensive.

We're at war. Every day there are emergency alerts to warn PWC's and our advocates about incoming unsubstantiated findings concerning CFS, and/or quick and dirty so called 'replication' studies that must be addressed. There are articles that proclaim shoddy findings that refute the WPI's, the Cleveland Clinic's and the national Cancer Institute's XMRV findings in Science on October 9th, 2009. We are few to respond, because most of us are too ill to even get to a computer. But to dismiss us as useless and insignificant is a mistake. A monumental one. I may not be able to walk around the block, but it is a strategic error to think my spirit, my personal power, and my will to live to see those pay for trying to marginalize our lives, and extinguishing the dignity of all PWC's for greed and power, are just as fatigued as my physical self. I have a weapon. Actually I have many, but today it's about just two.

These women are fierce warriors. Their understanding of the past and present bio-medical and bio-political issues is our tip of the spear of truth. It's because of their tenacity and dedication that I am able to mash the CFS defensive keys on my keyboard. Countless times I have been able to use their hard work to our advantage, through links in comments I make sure to write daily, as needed. BAM! POW! Take That, and THAT Dr. Wessely and Dr. Reeves. SLAM! Your powers are what are useless and insignificant these days. That's right, retreat to the rear!... to your backrooms, and sort out the 'how' and the 'when', and 'who' you can blame as you sputter and fume. And don't look to those who have been pulling your strings for the last 20 years. You can rest assured they 'think' they have obliterated any past affiliations with you already. And everything else will be blurred. And the ones that 'think' they have safely retreated; well, they need to upgrade their arsenal. Theirs are no match for the likes of Mary and Khaly.

So Mary and Khaly, I thank you. Thank you for your presence. Thank you for your dedication. You fortify our ranks with courage and strength.

ASCO GU: Novel Retrovirus Mimics HIV Transmission

2010-03-08T09:51:00.003-07:00

"SAN FRANCISCO -- A novel retrovirus implicated in prostate cancer appears to be transmitted much the way HIV is, researchers found.

The recently-discovered xenotropic murine leukemia related virus -- dubbed XMRV -- likely spreads through contact with blood and semen, Eric A. Klein, MD, of the Cleveland Clinic, and colleagues reported here at the Genitourinary Cancers Symposium....."

see more here

Third study finds no link between mouse virus and chronic fatigue syndrome

2010-03-02T08:41:00.000-07:00

Comments concerning the LA Times article.

It's just ridiculous how uneducated the journalist is. It's sad, and Such a disservice to their readers And pwc's, that they allow such articles without doing the proper research.

CAA-XMRV: Tell Me What It Means To ME?

2010-03-02T08:17:00.000-07:00

Khaly, bravo sister! An expose on how much the CAA is 'working' for us from CFS Un-Tied Blog.

The National Cancer Institute, with Mikovits and Ruscetti, finds XMRV in CFS patients with antibody and new serology tests

2010-02-24T12:55:00.003-07:00

Title says it all, and it's Great news!

XMRV Global Action: The National Cancer Institute, with Mikovits and Ruscetti, finds XMRV in CFS patients with antibody and new serology tests

Dr. Sandra Ruscetti Dr. Ruscetti is the head of the Retroviral Pathogenesis Section, Laboratory of Cancer Prevention. She received her Ph.D. from the University of Pittsburgh studying the genetic control of the immune response with Dr. Thomas Gill. In 1975, she joined the laboratories of Drs. Wade Parks and Edward Scolnick at NCI and began her work on the pathogenesis of mouse retroviruses.

"We are currently using knowledge and reagents obtained from working with mouse retroviruses to study the xenotropic MuLV-related human retrovirus XMRV, which was recently discovered through an association with prostate cancer. In collaboration with the laboratories of Judy Mikovits and Frank Ruscetti, we were able to use antibodies developed against the envelope protein of SFFV to detect infectious XMRV in the blood cells and plasma of patients suffering from the neuroimmune disease chronic fatigue syndrome (CFS). We were further able to develop a seroconversion assay using cells expressing the SFFV envelope protein to detect antibodies against the virus in the plasma of CFS patients. We now plan to apply our knowledge of the pathogenesis of mouse retroviruses that cause cancer and neurological disease in rodents to study the molecular basis for similar diseases associated with XMRV. We are in the process of developing rodent models for determining the biological effects of XMRV in vivo, which if successful will provide a small animal model for preclinical testing of potential anti-XMRV drugs. In addition, we are testing both in vitro and in vivo the biological effects of the envelope protein of XMRV, which like its related SFFV counterpart may be responsible for the pathogenicity of XMRV. " Quote from Dr. Ruscetti

Full details here at The National Cancer Institute

Thank you NCI and WPI, for keeping the momentum going!

CROI: Secrets of Novel Retrovirus Unfolding: A Must Read

2010-02-24T12:51:00.001-07:00

"... XMRV, has been confirmed to replicate primarily in reproductive organs and lymphoid tissue, according to a primate study reported at the Conference on Retroviruses and Opportunistic Infections." Quoted from Article.

Please read, as well as watch the video on the linked url. The study speaks volumes.

Friday Press Conference from the 17th CROI in San Francisco

Dr. Mikovits - Dr. Cheney on XMRV(2/20/10) - And Dr. Peterson Video (11/09)

2010-02-23T09:33:00.003-07:00

From Dr. Cheney's office on Saturday, February 20, 2010, with Dr. Mikovits on speaker phone.

Dr. Peterson in November,2009 on CFS/ME

Cardiomyopathy - 100% in ME/CFS Patients

2010-02-21T09:09:00.001-07:00

Cardiomyopathy - 100% in ME/CFS Patients

Thank you Dr. Lerner et. all.

Magical Medicine: How to make a disease disappear

2010-02-15T10:50:00.002-07:00

"I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV”

(Dr. Nancy Klimas, one of the world’s foremost AIDS and ME/CFS physicians; Professor of Medicine and Immunology, University of Miami; New York Times, 15th October 2009) [First page in the PDF below]

Press Release

PDF

Happy Valentines Day!

2010-02-14T14:03:00.003-07:00

Crickety-Crockity, Crickety-Crook

2010-01-26T11:56:00.014-07:00

The new year has borne fevered challenges in discovering what causes Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME). Instant collaborations between the bio-industry in the US, in the UK, Sweden, and Norway to mention just a few, immediately followed the Whittmore-Peterson Institute's (WPI) 2009 discovery of the XMRV retrovirus (One of only 3 other retroviruses ever discovered, HIV, HTLV1, and HTLV2), and it's association with CFS/ME.

"All of this has happened before, and it will all happen again." - Peter Pan

Those who have invested many years categorizing and treating this Neuroimmune disease as a psychiatric illness stand to lose so very much, unless they can prove the collaborative XMRV discovery between WPI, the National Cancer Institute, and the Cleveland Clinic was in error. Imperial College London raced to get their replication study results published recently in PLoS. It seemed to focus on dismissing the ground breaking discovery, instead of trying to seriously replicate WPI's research. A followup article from Science magazine, discusses what happens when scientists race to replicate ground breaking research. Inevitably, the results from moving too fast can be fraught with errors. In the case of the Imperial College London results, they used the wrong protocols, data pool and bio markers, so of course they failed to detect XMRV in any of their test samples. It's unfortunate that the newest result from Imperial College London was reviewed by peers for only three days before publication (Compared to the rigorous six month peer review for WPI's research). A longer review would have spotted the multiple technical errors. It is obvious the publication was not a serious replication study, but an attempt to mislead Science readers that the WPI study was de-bunked.

"As a special offer for today,
I'll tell you what I'll do.
All those who sign without delay!
Will get a free tatoo.
Why, it's like money in the bank
C'mon, join up, and I'll be frank:
Unless you do, you'll walk the plank!"

The WPI has also been attacked with untruths about their association with VIP Dx, who is offering CFS patients XMRV lab testing. “We structured the licensing contract to be sure that any and all profits that might emerge at VIP Dx from XMRV testing come directly back to WPI to benefit the research program” said Annette Whittemore, President and Founder of WPI, in a press release on Jan. 14th, 2010. Annette Whittmore founded WPI using her own assets, to hopefully generate meaningful results to help those who suffer from CFS/ME. She has seen first hand how deadly this disease is, from personal experience with her daughter Andrea's battle with CFS/ME.

There is so much at stake here. We are on the verge of understanding what XMRV does, how it is transmitted, and possibly a treatment, or even a cure for CFS/ME. The Health and Human Services Working Group on XMRV will have oversight over the federal effort on XMRV. Their objectives include (but may be not limited to):

1) Attempting to standardize and validate tests for XMRV. Then they'll test 1,200 healthy donors and 100 patients provided by the Whittemore Peterson Institute.

2) Assessing the prevalence of XMRV in the general populations, the blood supply and in other groups of people with CFS.

3) Finding out how XMRV is transmitted, what effects it may have, and how it may affect other groups.

"No, you can't get friendly with a crocodile
Don't be taken in by his welcome grin
He's imagining how well you'd fit within his skin"

The research to replicate WPI's collaborative discovery, the work being done by HHS to identify the prevalence of XMRV, and the risk to our blood supply is urgent. But it needs to be done with sound science. The CFS/ME community has seen in the past how embedded with other interest groups our own CDC and NIH are. They want CFS/ME legally categorized as a psychiatric illness for several reasons:

1) This serves the health insurance industry goals directly, as they save tens of billions of dollars annually by not having to pay out long term disability benefits to the millions of CFS/ME sufferers in the US.

2) Bill Reeves (Head of the CFS department at the CDC) still has vested interest with his CDC contracts with the Emory Mind and Body Program, and ABT Associates. They even made him an Adjunct professor for Psychiatry at Emory even though he is Not a Psychiatrist. ABT Associates has been investigated and penalized by the Feds for outright fraud in charging hours for non-existent workers. Hundreds of millions of dollars have been wasted at the CDC when it could have been used to help discover the causes of CFS/ME, rather then used to serve the psychiatric and health insurance industries. It's profoundly shameful, if not criminal.

"Crickety-Crockity, Crickety-Crook"

3) Publication for the new DSM-V (The Psychiatric Industry's bible) is due in May, 2013. If the UK and the US both use the same language to suggest the CFS/ME is a mental disease, it will make it easier for them to control edits for DSM-V, that would legally categorize CFS/ME as a somataform disorder (hysteria). That would mean only psychiatrists could make the legal diagnosis of CFS/ME. Which means the health insurance industry would be very satiated (their corporate clients too), as would the contractors Bill Reeves wants to continue with at the CDC.

"Yo Ho, Yo Ho, Yo Ho, Yo Ho, Yo Ho
You'll love the life of a thief
You'll relish the life of a crook
There's barrels of fun enough for ev'ryone!
And you'll get treasures by the tonSo come and sign the book
Join up with Captain Hook!"

The CDC currently categorizes CFS/ME on paper as a disease of the nervous system, and it has already been proven that CFS/ME is a Neuroimmune disease. But since there is no NIH or CDC recognized standard lab testing that reveals the organic basis of CFS/ME, they can continue to insist CFS/ME is a mental illness. With their special interests threatened, our biggest fear is that they will continue to try and stall any XMRV CFS/ME related research discoveries while our CFS/ME friends continue to suffer and die, and our blood supply safety risk increases. We learned our lesson with HIV didn't we? Seemingly not.

"Never smile at a Crocodile" - So say we all Peter Pan, so say we all.

Help continue the research momentum at Whittmore-Peterson Institute by donating. PWC's (Patients with CFS) cannot expect help from government grants. In the last 20 years, there have only been a handful of grants approved for CFS/ME research, even though some of the grant applications submitted received the highest review points ever awarded. We need your help. We need to resolve the CFS/ME crisis now.

Thank you

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

: SCIENCE VOL 326 23 OCTOBER 2009: http://www.sciencemag.org/cgi/rapidpdf/1179052?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci
: Failure to Detect Article in PLoS:PLoS ONE 5(1): e8519. doi:10.1371/journal.pone.0008519
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519
:ME Association Reprint:Science 15 January 2010: Vol. 327. no. 5963, pp. 254 - 255 DOI: 10.1126/science.327.5963.254
http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1146:xmrv-new-story-expected-in-science-magazine-tomorrow-14-january&catid=30:news&Itemid=161
:WPI In The News:January 14, 2010: WPI Announces Availability of Updated XMRV Testing
http://www.wpinstitute.org/news/docs/WPI_pressrel_011410.pdf
:http://www.ei-resource.org/columns/phoenix-rising/ongoing-xmrv-studies/
:http://behindthesurface.blogspot.com/2008/11/cdc-research-funding-scandal-20.html

A Picture is Worth a Million PWC Words.

2010-01-19T11:07:00.015-07:00

Imagine being attacked during a morning swim in the ocean surf. You recognize instantly something must be eating you alive. You don't know what it is, but in a moment during the struggle, you reach underneath the surf when the monster is revving up for another attack, and you can feel that your flesh is ripped apart on your legs. You now understand the damage being inflicted upon you even if you don't know what the monster is. You can make educated guesses based on the violence of the attack, and given the evidence underneath the surf; and based on those inferences alone, you can better plan your attack and/or hopefully your escape.

Dr. Lucinda Bateman showed us a slide yesterday in her Webinar presentation on XMRV, hosted by the CFIDS Association, and this is how I felt when viewing it. I could SEE the damage being inflicted on my body during post-exertional malaise. It was another one of those CFS watershed moments for me. We still don't know what is causing the damage or why, but the slide I will show you below clearly details the violent damage being inflicted. It is evidence I can use to recognize what I might be able to do to attack the monster, and increase my quality of life. It also is evidence I can show to the people in my world, that may not understand the violent attack of CFS.

According to Blood Biomarkers for CFS: A Light at the End of the Tunnel, "Alan R. Light, PhD, and his team at the University of Utah Health Sciences Center have identified genes that increase in activity following moderate exercise." The discovery was published in Journal of Pain. Quoting from the Blood Biomarkers article:

"First, the investigators’ logic is based on mouse experiments they conducted to understand sensory muscle fatigue and pain. These animal studies showed that there are molecular receptors that act together to detect the metabolites produced by muscle contraction. Second, the investigators used the findings from mouse experiments to develop a hypothesis for examining the blood in CFS patients and controls to look for activity of genes shown to detect metabolites that result from using muscles. Third, they used the kind of moderate, full-body exercise that is known to cause post-exertion fatigue in CFS but is well-tolerated by healthy control subjects."

For years, PWC's (Patients with Chronic Fatigue Syndrome) have been trying to tell their doctors and caregivers how they are physically feeling. For years we have tried to tell our family and friends the same. We physically cannot tolerate exercise, unless we wanted to experience a near death experience for days after. They couldn't get that. And I can see that. We don't Look sick. Most of the time, every word we have tried to use to explain the debilitating fatigue was in vain. I explain it as partying hard all night with alcohol and recreational drugs; smoking a pack of cigarettes when you don't smoke, and staying up all night. Then with no sleep, you start climbing Longs Peak with a 40 pound pack, and the worst hangover you have ever had. Then, as you reach the top at appx. 14k feet, you get the worst flu of your life. Add it all up together and that's how a PWC feels every day. I know this is what it feels like, because I actually did this in my thirties, before I got ill. Yes, it was a bad day. :+)

Regardless of how we try to explain it, it just seems impossible to understand. Or, if your reference does get through to whomever you are explaining it too, inevitably they think "There's no way. There's no way someone can feel that way day in, and day out, for weeks or months, or even years? They have Got to be exaggerating" Well, we don't have to try and explain it anymore; at least try to explain why we 'crash' after exceeding our limitations. This picture speaks a million PWC words, and then some, about what happens.

(Click on the image to enlarge)

The top slide in the image represents healthy controls after 25 minutes of exercise on an Airdyne bicycle (uses both arms and legs to turn the wheel). The middle slide represents results of CFS patients given the same test. The bottom slide represents MS patients, as well given the same test. I can try to interpret for you?, but I am sure I wouldn't do it justice. So, I do recommend a short trip to the article for a detailed explanation. One thing I can tell you is that by looking at the above slide, it's just astonishing what happens to us during post-exertional malaise. I can point to the tallest marker in the middle slide which represents the results from the PWC testing, the pink one?, and tell you it is associated with cardiac output. And I cannot help but wonder how this relates to Dr. Paul Cheney's theories, and evidence, that a PWC's heart has a Left Ventricular Diastolic Dysfunction (Page 5 in the PDF) but not in the normal sense of the definition. Cheney comments that:

"...patients with M.E. (and CFS) suffer from cardiac problems since they cannot pump sufficient blood to the heart. He explains that the inability of very ill patients to stand up is the body protecting itself from cardiac stress and possible death. Cheney explains that if patients draw down their lifestyle to live within the means of the reduced cardiac output, then progression into congestive cardiac failure (CCF) is slowed down, but if things continue to progress, a point will be reached where there is no adequate cardiac output, and dyspnoea (Shortness of breath) will develop, with ankle edema and other signs of congestive cardiac failure. In order to stay relatively stable, it is essential for the patient not to create metabolic demand that the low cardiac output cannot match. Attempts to push beyond limits will cause injury or death."

Any PWC that has doubtful family and friends, doctors and caregivers?; all they need to do is show them this slide and the corresponding literature that backs it up. It says it all. Thank you to all the doctors, scientists, and PWC's that participated in this ground breaking discovery of what literally happens to us during post-exertional malaise. You just helped us save energy in trying to explain what happens, and how we physically feel. You validated our own sense of just how physically sick we truly are. I cannot express to you my thanks for this evidence.

Just tell the truth already UK; get out of bed with the insurance industry....

2010-01-14T10:48:00.051-07:00

... and leave their seduction behind. We understand the insurance industry is more powerful the the US IRS, and that the big bad scary wizards are frightening you from behind the curtain. We also understand they are no doubt wanting the US and the UK to be on the very same page with respect to CFS/ME. Because if they are not, it makes it more difficult to control how CFS/ME is diagnosed now, and in the future. What was that you say UK?, oh yeah, that the DSM-IV (Psychiatric Bible) is being revised and the insurance industry wants to make sure that CFS/ME would be classified as a somataform disorder (hysteria), even though "WHO classifies it currently as a neurological disease, and by the CDC as a disease of the nervous system?"** Wait what?, the edits are to be published for review this month? And publication for the new DSM-V is due in May, 2013? Gosh, go figure you want to stall.

How can this happen? Well, it can't if there is any evidence that reveals CFS/ME is a Neuroimmune Disorder. If XMRV is found to have a high association with CFS/ME patients, then the insurance carriers are screwed. But wait. I'm confused. Why again does the UK specifically state that CFS/ME patients cannot donate blood? Why was I recommended by my first diagnostician in 1998, who is now in the CFS department at the CDC, to also not donate blood? Since when is a somataform disorder an infectious disease?

The insurance industry needs to legalize that any diagnosis made for CFS/ME on this planet comes from the psychiatric industry, because they currently save 10's of billions of dollars every year by not having to pay out long term disability benefits to CFS/ME patients. They will do everything in their power to move this proven Neuroimmune illness into the DSM-V, to maintain the influx of illegal wads of cash. The Psychiatric industry needs it too. How else will they be able to keep their CBT and GET programs up and running?. The corporations are not blameless either; but that's exactly what they hope to be. I personally saw one shift to new policies provided by their insurance carriers, that specifically excluded CFS/ME and Fibromyalgia patients in 1996. And I want to know how much Big Pharm gains to net with the medications the psychiatric industry will use to 'maintain' this 'hysterical' disease. Are you kidding me? The Scientology cult scam has nothing on you people.

The insurance industry will attempt to slow any CFS discoveries down to a crawl or even a halt, until they have what they want. And the UK weasels, and their CDC/NIH cohorts in the US, need to maintain their bed bug relationships with those who are keeping them alive and squirming. But you can't hope to continue much longer. Look around you. Are your industry friends still acting towards you in the same way? Are you sure? Those whispers you hear in the hallways? They are not hallucinations. You will be on the way out soon, and your colleagues and peers know this, and will want to get as far away from you as possible. So, those of you in the UK that are still under the wizards spell, we get that either you are trapped by them under the bed covers, and/or so tongue-tied by your egos inability to say "Damn, we screwed up", that you continue to spew mis-information concerning CFS/ME and the XMRV findings. But, for crying out loud; either join the WPI in a positive and open engagement to CORRECTLY replicate their research, which was done in concert with the National Cancer Institute and the Cleveland Clinic, or just slink away in shame already. Trust me, we won't follow you. Except for the criminal proceedings.

Here, I will give you an out (as if you haven't already built this back door). See, it's true that people get chronically fatigued. All kinds of people. Chronically ill people with cancer, diabetes, or heart disease, can be chronically fatigued. People that have other genetic and hereditary diagnosed illnesses can be chronically fatigued. People with lifestyles that aren't exactly um.. conducive to long life and happiness, can be chronically fatigued. Psychiatric patients can also be chronically fatigued. So, just say "Oh well yeah, we get it now. And our program does help some that are chronically fatigued, but they most likely do not have XMRV. CFS/ME patients do have XMRV. And XAND (XMRV Associated Neuroimmune Disorder) is to XMRV as AIDS is to HIV." See how that works? Although it's doubtful, you may still have your careers (your reputation is still shot though. I mean come on, if you think your reputations will survive this, then now would be a good time for you to commit yourselves voluntarily. I will supply the referral). You can still help those who do suffer from chronic fatigue. No harm, no foul. Well, wait. You did contribute to the neglect, and deaths of thousands CFS/ME patients. You (UK) forcibly removed CFS/ME patients from their homes, and admitted them to mental institutions, where you tortured them until they died 2 weeks after their release. WHO ARE YOU PEOPLE? HOW DO YOU SLEEP?

Seriously, how the Hell do you sleep?

Please help me help the Whittmore-Peterson Institute continue their XMRV related research. They want a treatment. They want a cure. Go here to learn how you can help.

** Quoted from BLOG.BLUERIBBONCAMPAIGNFORME.ORG

WPI's statement regarding the UK's bogus replication study.

2010-01-06T14:58:00.001-07:00

In light of the UK's announcement of their XMRV replication study today, and how they failed to connect XMRV with any of their CFS patients?, here is a statement from WPI:

Official Statement from the Whittemore Peterson Institute Regarding UK Study

NOTE: WPI conducted a 6 month rigorous peer review of their findings before sending their research to Science for publication. The UK reviewed theirs for.. um... 6 days?

Those of us who have been ill with CFS/ME for many years, recognize the actions of those who are trying to impede the process of replicating WPI's research that points to the new XMRV retro-virus having associations with CFS/ME. They are running for cover, and using mis-information such as this as a distraction, and to soothe the psychiatric and insurance industry demons. They can try to slow down progress to a crawl. It might give them time to think of how to save their reputations, and their careers. They are running out of breath trying so hard. It is a marathon they cannot finish, much less win. Remember now, just because someone is in front of the pack, doesn't mean they are leaders.

We've lost Jack

2010-01-06T09:52:00.004-07:00

I met him in the WPI forums in October. Here is his post that Christine Douglas received permission from Jack to use. I hope it's ok for me to share:

Posted by Jack, October 2009.

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

At this point; my main concern is Hope for all of the much younger. I was fortunate. I didn't contract this until age 50-(15)-years ago. At least I had a very good life until then. I truly lived "La Dolce Vita" (the sweet life). So please understand that my "rage" & skepticism isn't about "me"; but for those who do have the time if treatment becomes available. Years ago; when diagnosed with "Chronic Epstein-Barr Virus"; I was warned that in my future ,I might develop Cancer. I was told that people with unusually high titers of "Epstein -Barr", carried this potential Cancer risk,--Lymphoma, etc.- So even then ; it was known that their was a viral "link", but was never pursued, because @ that time it was referred to as the "YUPPIE FLU" for those of you who might not be aware of our "hypochondriac Stigma", which still exists to date, unfortunately, but is "slowly" becoming acknowledged as REAL. I was diagnosed with Prostate Cancer 4-1/2 years ago & refused ALL treatment. My urologist thought that I was out of my mind. After all; "they" could CUT, BURN or POISON it. I was told by him that the most time I would have on this Lovely planet was 4 years, without treatment. Well folks; I'm here 6 months longer than my "Expiration Date". My reason for refusing treatment is that my immune system is & was shot & that any of the options presented to me by my very concerned Uroligist; would kill me due to "trauma" from any, or all suggested alternatives. We are too ill to endure conventional means.

After all; death isn't all that bad. At least one dies "from" Prostate Cancer.--ME/CFS, you die "with" it ! --Well, I am a living testimonial that there IS a "Viral link" with ME/CFS. Now; the major question is which virus is the "ONE", or is it a synergistic effect of many, which wreak havoc in the immune system & allow these mutations to occur ? Every new day is a "Bonus" for me & I PRAY for all of us & ask that this "cure" will be available to the young in the very near future. Death for me would be a reprieve from this “Zombie” like existence.

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

Jack De Luca, our WPI friend and advocate, committed suicide yesterday. God bless you and your family Jack. Sleep In Heavenly Peace.

XMRV discovery makes #55 on Discovery's top 100 storys for 2009.

2010-01-02T09:51:00.002-07:00

http://discovermagazine.com/2010/jan-feb/055

Dr. Nancy Klimas; Aids Researcher and CFS Clinician on XMRV

2009-12-17T11:57:00.008-07:00

The first two minutes of this video is all you need to watch to gain an understanding of what it means to be sick with CFS. It's what we all have been trying to tell our doctors, friends and family since we fell ill; but dared not to fearing ridicule and/or just plain disbelief. The rest of the video in its' entirety is posted here at ME-CFS Community.com.

Find more videos like this on ME-CFSCommunity.com

"Immunologist Dr. Nancy Klimas is recognized worldwide for her extensive work with ME/CFS/FM and Gulf War Illness. In her efforts to expand our knowledge and understanding of these disorders, she wears many hats, including: Professor of Medicine-Psychology, Microbiology & Immunology at the University of Miami’s Miller School of Medicine and the Miami VA Medical Center; Director of the Miller School's EM Papper Laboratories of Clinical Immunology and the University of Miami/VA Gulf War Illness and ME/CFS Research Center; member of the federal CFS Advisory Committee (CFSAC); former President and current Board Member of the International Association of CFS/ME (IACFS/ME); a founding editor of the Journal of Chronic Fatigue Syndrome; author of more than 120 peer reviewed articles and three books; and a member of the ME/CFS Fair Name Campaign Advisory Board."

2009-12-10T15:10:00.017-07:00

In response to Hillary Johnson's new blog Article "When did it stop being about you and become all about them?"

And I HIGHLY recommend reading this article, and all the comments at the end. And of course, her outstanding book Osler's Web.

Thank you Hillary. You're kinda my hero <3

~NOTE~ Slightly edited since posting.

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

Hillary,

Thank you for your voice! When the news of XMRV came out, I was... hopeful, for the first time in 13 years. During those years, I had stopped talking about my illness. period. And my friends and family liked that just fine. All i wanted was to be left alone so I could rest. But, they didn't like that. So, I was supposed to not be sick (Don't talk about it either), and participate in family and friend activities that would make me sicker (Ok, there's one brother that doesn't belong in this paragraph, and of course "Mom". :+)). Needless to say, I left town.

Week one of the XMRV announcement, I was euphoric. I started re-involving myself in CFS support and activism related activities online. I read and read and read some more about how this might change 'everything'. I put up a blog, got involved with forums and started talking about 'it' again. I got facebook, and started preparing emails to send out to all my friends and family, to help them understand what XMRV meant to all PWC's. The first mailing, out of 15+ contacts included, all friends and family, I got two 1-line responses. "That's ok", I thought, "They just have to understand it more".

So, during the next month, I sent out more emails, trying to elicit up support and advocacy from them to mail emails and letters to their representatives and congressmen and woman. Letters to the new surgeon general. etc...

I got 'one' response. it said "will do!" Since the announcement, and a total of 4 'emails', I have yet to hear back from any of them with follow up questions and/or interest.

I guess I should have known that would happen, but it floored me. But, after rethinking about one contact, who for years sent me Breast Awareness campaign emails every year, I guess I should not have been so surprised. (And no, she didn't have breast Cancer, nor did any of her friends. It's just that breast cancer was 'real')

My point is: I don't really know what advocacy looks like. Except from your book and blog, and those newly found friends I now confer with daily in the WPI forums. But the CDC's whitewash for the last 20 years has clearly dictated the level of advocacy I could expect from non-pwc friends and family. That, in and of itself, tells the complete story of how Good the CDC has been able to squash us all into the gutters.

So, this month, I have backed off a bit more into shadows again (I too, have been well programed). I know how good a job the powers that be can do, to move the "CFS" XMRV findings into the janitor's closet again. I know how good they are at chewing up anyone who stands in their way of trying to keep things quiet. For example, this week alone, I have read 4 major articles on XMRV. Not ONE of them used the word "CFS" in relation to XMRV. They mentioned how it related to prostate cancer is all. And at the end, they did say, how there could be treatment hope for them, and possibly "For other illnesses as well".

The segments I have seen on TV regarding this are on shows for women and there was an article in Women's Day. (God forbid they should even mention this is a deadly pediatric disease) So, already I can see that powers are trying to distance us from the prostate cancer XMRV findings, and put us right back into the 'women's' trash bin. There's this pit in my stomach that is starting to ache again. There are tiny hairs standing up on the back of my neck.

There is nothing they do not have at their disposal to derail us. They have been at this con job for 20+ years, and they are gooood at it. So make no mistake, people, they are already scheming ways to either discredit the findings, and or scheming a way to save their own asses should the findings be undeniable.

And by the way, when XMRV was found to be in some prostate cancer patients, did the world wait for the CDC to replicate those findings?

I am encouraged to see independent research sprouting up in Norway and arg, now I have forgotten where else. So, even if the CDC does 'decide' they cannot replicate the findings, they will have a harder time explaining to the world why their study is 'the accurate' one. And what happens if/when the findings are not our best hope? I don't know. That does keep me awake some. But proof and evidence I can deal with. Snake charmer activity at the CDC level? Not so much.

If we needed advocacy ever, we need it MORE then ever now. So, I continue to help my family and friends get de-programed. I continue to get out here every day I can sit up to type, and make sure we are not squashed anymore. And I pray people do not sit back now with this announcement, thinking, 'Yay, we win!' Because they aren't sitting back in front of Reeve's water cooler at the CDC. You can be sure if they are not finding ways to dis-credit this, they are making sure they can back paddle at the speed of light to save their own skins. And that, is what makes those tiny hairs on the back of my neck stand up.

- katieann

Well said

2009-11-24T17:13:00.002-07:00

Anonymous sums it it well from here , about the insurance industry not wanting to pay out long term disability insurance to CFS patients, and the ineptness of the CDC:

Anonymous said... "Hillary Johnson has said much the same has you have. Others, including myself, have long believed your arguments were the case for the extreme neglect, actually, deliberate criminal intent by the CDC as a whole and those that ran the CDC/CFS program. ..... Dig some more and see if you can't find documents or people that will tell you if there was some sort of concerted plan to keep the CFS sick from getting insurance disability when the AIDS/HIV people were getting it - but as I have said elsewhere, those AIDS/HIV people "were well behaved and died quickly" while the CFIDS people stayed terribly sick and disabled for years and decades."

If I could...

2009-11-24T16:02:00.004-07:00

I would walk to Washington for May 12th, 2010. CFS Awareness day.

Google says I can in 23 days! Who knew! ~ giggle~

View Larger Map

Want the good news first?

2009-11-24T15:23:00.007-07:00

Good news! Since the discovery of XMRV, the world will no longer shun us (PWC's) as outcasts and/or those who are genetically flawed as to where we just cannot handle the normal stresses in everyday life! (hence my blogger name =p)

Nononono... now we can be shunned for all the Right reasons. As in: "OMG, stay away from her, she has XMRV; she's a leper! She has 'cooties'! Run, Forest, RUN!!"

XMRV: New retrovirus found in CFS patients

Failure to Thrive

Failure to Thrive's Last Post

XMRV - REQUIEM FOR A SPECTRE

The UK ME/CFS Secret Files

The White House Chronicle

Strings of Gold

The Age of Autism

Ryan Baldwin: XMRV+

ME/CFS, Autism and More

PMRV joins XMRV as possible etiologic agent of ME/CFS

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

Virus found in ME/CFS Children in Scotland

The Persistence of Yellow

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

Renewed Hope: WPI's Brainchild is Born

To those who left us, and those who remain

FDA/NIH Alter Paper in PRESS

Three HIV Drugs With Possible Efficacy Against XMRV

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

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

Dr. Judy Mikovits: Science Paper Redux

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

The Paper Chase

CDC Boilerplating 101

Got Clout?

Stalling 101: A CDC Primer

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

The BIG One!

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

One Giant Leap for CFSkind

The Controversy Continues...

Blood Product Distribution 101

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

"What About ME?" Promotional Trailer

New XMRV Diagnostic Test to Be Available by July.

The Evidence since 1954

New Threat to US Blood Supply

Car 54 - Where Are You??

XMRV on Tour!

WPI and Cerus Confirm Inactivation of XMRV by the INTERCEPT Blood System

Kenneth Feinburgh, we need you!

Links to May 10ths 2010 CFSAC Speakers

X Rx Blog

Where we aren't, anymore.

Positive ‘XMRV-study’ a matter of time

Dr. Bell makes a personal appeal to fund WPI's research with XMRV/CFS

Lightning Strikes Children: An Expose by Khaly Castle

Dr. Myhill Banned for Prescribing B-12 and Magnesium

European ME Alliance calls for Europe-wide ban on ME/CFS blood donors

Fed's Ramp Up on XMRV Study?

The Devestation of a Disease - A Lifers Statement

Anthony Fauci: How not to be a scientist

XMRV Found in Dutch Patients

Ontario Makes CFS an Official Neurological Illness

Annette Whittemore, CEO and Founder of WPI, responds to Dr. McClure

Transcript quotes from Dr. Coffin about 2010 CROI

Complete transcript and video can be found at:http://www.medpagetoday.com/clinical-context/HIVAIDS/19456 ˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

A Welcome Ban on ME/CFS Blood Donations: by Parvofighter

Canadian Blood Service now Bans CFS Patients from Donating Blood

Virus leads Canadian blood service to ban certain donors

There is a new potential serology test for XMRV in the US:

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

And more from here:

Bayer Documents: AIDS Tainted Blood Killed Thousands of Hemophiliacs

Isn't it wonderful when blood safety turns into big business?

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

New Phase III Ampligen Trial at Hunter-Hopkins Center

Potential Risk to Blood Supply Probed

A Light in the Darkness?

A Light in the Darkness: Good News Ahead for XMRV?

XMRV is infective in primates and produces an immune response

Characterization of XMRV in prostate cancer

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

Invest in ME: Letter from America

Grass Roots Advocacy; by Khaly Castle

Letter to the U.K. Secretary of State for Health, from Invest in M.E.

There's something about Mary... and Khaly

ASCO GU: Novel Retrovirus Mimics HIV Transmission

Third study finds no link between mouse virus and chronic fatigue syndrome

CAA-XMRV: Tell Me What It Means To ME?

Complete transcript and video can be found at:

http://www.medpagetoday.com/clinical-context/HIVAIDS/19456

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙