The Persistence of Yellow

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

She decided it must not have been important."

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

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

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

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

And so it begins!

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

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

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

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

The Alter/Lo Paper

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

The Patient Advocate

CFS Central

Living With Chronic Fatigue Syndrome

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

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


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

 

˙·٠•●♥ ᙬٱٱᙩ ♥●•٠·˙

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

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

For additional information from WPI, the Press and Advocates:

WPI Press Release: WPI Celebrates new Building Dedication

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

The Rainmakers: ME/CFS Patient Advocate 

Hope Soars for Research Center 

X Rx was there :+)

Andrea at the WPI/CMM sign describing the mission:

Ours Are The Wings Of Hope.  

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

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

˙·٠•●♥ ᙬٱٱᙩ ♥●•٠·˙

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

Tomorrow will be a Better day.

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

Renewed Hope: WPI's Brainchild is Born

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

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


Take a walkthrough here:

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

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

Findings by Reno scientists confirmed by U.S. government

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

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

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

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

An extended RGJ article on the center is here:

New UNR center to aid in fight against numerous afflictions


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

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

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

To those who left us, and those who remain

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

In dedication to: 

Aylwin (Jennifer) Catchpole

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

Jennifer Catchpole's Wall 

˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

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.


˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙

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

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

Rest in Peace

FDA/NIH Alter Paper in PRESS

From Mindy at CFS Central:

FDA/NIH Alter Paper in PRESS

Also, read her interview with the CDC:

Q & A with CDC's STEVE MONROE

Thank you Mindy!

Three HIV Drugs With Possible Efficacy Against XMRV

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

HIV Drugs With Possible Efficacy Against XMRV

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

Video Courtesy of KSL.com

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

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


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


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


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

wootles!

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

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


The Experiment in Progress


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


NOTE: Addendum from Dr. Jamie

Dr. Judy Mikovits: Science Paper Redux

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


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


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

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

by Cort at Phoenix Rising:


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


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


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


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


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


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


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


mmo though.