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

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Tuesday, August 24, 2010

The Persistence of Yellow

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

She decided it must not have been important."

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

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

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

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






And so it begins!

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

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

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

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

The Alter/Lo Paper

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

The Patient Advocate

CFS Central

Living With Chronic Fatigue Syndrome

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

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


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

 
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Sunday, August 22, 2010

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

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









For additional information from WPI, the Press and Advocates:

WPI Press Release: WPI Celebrates new Building Dedication

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

The Rainmakers: ME/CFS Patient Advocate 

Hope Soars for Research Center 

X Rx was there :+)



Andrea at the WPI/CMM sign describing the mission:


Ours Are The Wings Of Hope.  
A Testament to Purpose, Patience, and Overcoming the Odds. 
Soaring over Barriers to Bring Dignity and Relief to Patients and Families Around the Globe.

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

Tomorrow will be a Better day.

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




Tuesday, August 17, 2010

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.



Thursday, August 12, 2010

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