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Saturday, July 3, 2010

#73~ CDC-XMRV (not) paper ~ WPI responds

Research Science badmitton? What the heck??
Science paper: ping pong, tennis, golf, whatever is NOT what this is supposed to be about..
This is a time for Serious Research Science NOT game playing.



This is REALLY getting OLD... 
IMHO, I believe that when Reeves left the CFS Dept, that he took or buried the samples of XMRV so they would never be discovered at the CDC. Reeves even SAID~ while he was still in charge of the CFS Dept of the CDC, that he "didn't expect to find XMRV" ~ duh yeah... 
even when it's sent to YOU ?? He either has NO brain cells or is INTENTIONALLY using another definition and testing methods so that he/they will NEVER find them as he states...

Hum... SURE sounds like a cover up and he must have buried the evidence before he left the Dept to me.. but WAIT... is that his name I SEE on the NEW Paper ????


This bumbling group that is "suppose to be" OUR Center for Disease Control
can't even find XMRV when it is "Handed to Them." HOW Dense are they?

Can anyone say ~ 
"Intentional Cover-up," 
"History is being repeated,"
"the band plays on"...
anything ringing a bell yet?


And mind you.. this is NOT ONLY about ME/CFS... This is NOW a "Public Health" issue because of all of the donated blood for the last 25 years that has contaminated the public blood supply ALL over the World that now has XMRV in it... Hello !!!


We REALLY need the Department of Health and Human Services (DHHS)
Sec. Kathleen Sebelius to "reign in" the CDC and to do some "house cleaning"
over there and make them a source of Pride not a National Embarrassment and a Public Health HAZARD.


PLEASE write to her and Sen. Harry Reid and ask them to form a 'Congressional Committee' to find out what the heck they are doing over there with the samples they are being sent and WHAT kind of Research they are doing if the WPI, the Cleveland Clinic, the National Cancer Institute, NIH and FDA "can" FIND XMRV but the CDC can't...???  

They are proving themselves to be absolutely NOT Trustworthy and there Needs to be a Congressional Investigation about their inept behavior. They are NOT conducting themselves with Integrity and are certainly "covering-UP" something... and it smells rotten for sure.

We have written to them since we first sent the Obama-Biden Transition paper in after they were elected. so we need to keep this IN FRONT OF THEM...


Even the CFIDS Association, Dr Suzanne Vernon said the CDC was NOT looking for XMRV... and "That's saying a mouthful."


They are wasting our precious tax dollars and NOT finding what is handed to them.. Are they Ignorant, Dumb, Blind, or what's their excuse de jour?


Ask them AGAIN to "change" the CDC definition of CFS and to NOT use the Fakuda, but the Canadian definition...We have already presented the CFSAC with the petition that was signed by thousands of people. We do NOT want them to Widen the definition and test folks that are only depressed or tired.. that is NOT the population that they are suppose to be testing.....THAT is NOT ME/CFS..

We the People "will NOT Tolerate this grade school chemistry" from the CDC any more.. PERIOD. 


Please write to the First Lady Michelle Obama also and to Senator Harry Reid and to Sec of HHS Kathleen Sebelius..


First Lady Michelle Obama
1600 Pennsylvania Ave NW
Washington, DC 20500-0004


The Honorable Harry Reid
United States Senate
522 Hart Senate Office Building
Washington, D.C. 20510-2803



Kathleen Sebelius
The U.S. Department of Health and
Human Services
200 Independence Avenue, S.W
Washington, D.C. 20201

email: Kathleen.Sebelius@hhs.gov

 

*** If you do NOT wish to snailmail them and WISH them to be DIRECTLY Handed to Sen. Harry Reid and he will take them back to Wash. D.C. and "make SURE" they are given to the Proper person... Then you may write your letters and email them to Andrea Whittemore and she WILL hand them to him Personally !!! and we will hand him buckets of Letters that should make a GREAT Impact, so Please start writing and editing your wording until you have exactly what you want to say and then by the end of July we shall be ready to send these ALL to Andrea and Make an IMPACT back in Wash DC when the Congress comes back into session, as the NIH is holding the 1st International XMRV Workshop over Labor Day weekend, and the next CFSAC meeting will be taking place so the HHS "will be" paying attention to what is going on.. and This would be the Perfect time for Sen. Harry Reid to see if he can get a Congressional Hearing called depending on just HOW BAD things roll out this summer..during the summer Retroviral paper show..don't forget your caramel popcorn to enjoy the show while you take your notes..


The Senate is on July 4th and summer Break soon... so we are working for "Maximum Impact" here.. so the more letters we can give him "at ONCE" the Bigger our Impact will be.. so watch the Insulting non-science show this summer of the CDC and write you letters and then get them to Andrea to hand to Sen Reid personally when WPI "OPENS their Doors", as they are in Nevada~ HE will be in attendance.. So PLEASE help us get these letters TO him DIRECTLY, OK? Seriously !!!

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

Here is the WPI's response to the new CDC paper~

Whittemore Peterson Institute Statement regarding
Centers for Disease Control XMRV Study


Contrary to the WPI study published in Science in October, 2009, as well as studies done by
others, including the NIH and FDA, Mr. William Switzer of the Centers for Disease Control reported
that his research team was unable to detect XMRV in CFS patient samples. This negative finding is in
contrast to the WPI study in which we detected XMRV in 67% of CFS patient samples.


To correctly replicate scientific studies it is imperative that researchers use the same methods and patient criteria to ensure accurate results. The methodology used by the CDC was not the same as that used in the WPI study nor was the patient selection criteria. In September 2009, WPI sent the CDC twenty confirmed positive samples and the appropriate methodology to help them develop a clinically validated test. However, this team chose not to do this.


Until researchers use clinically validated tests to detect XMRV in patient samples, as WPI and their collaborators have successfully done, an accurate association of XMRV to any diseased population cannot be made. For this reason, WPI researchers and many others are currently validating more sensitive clinical assays to assist federal agencies in their search for the true prevalence of XMRV in the human population.


WPI will continue its core mission to deliver answers to patients with neuro-immune diseases by supporting the development of accurate diagnostics and providing effective therapeutics and clinical care.

http://www.wpinstitute.org/news/docs/XMRV-CDC%20Statementrevisedawfinalawfinal.pdf

********************************
As we need to find out who "all over the world has XMRV and who doesn't" and screen the world's blood supply... this is a BIG deal.


It does NOT matter what illness/cancer this retrovirus is linked to or causes...
The Research that is Done needs to be Legitimate and Accurate and they need to be using the same methods and samples. ONLY then will we get consistent results and then move on to researching what else these folks have picked up and sort them out from those that don't have it and look for the causes of the other Neuro Immune Diseases.. 

I have also just read a report that even claims that Narcolepsy is probably an Immune Disease. 

The repercussions are endless.. but the testing has to be flawless and Legit for us to make progress at all...

Please write your letters AND also ask everyone you know to support the ONLY "current place" that is NOT a Gov't agency and is a non-profit working ONLY to help us with Legitimate Science....aka the WPI.

http://www.wpinstitute.org/help/help_donation.html 


Also, Please write your Thank You notes to Dr Dan 
Peterson, ASAP~ 
so we can present them to him in a creatively hand made scrapbook 
form graciously made by Lisa at the WPI Gala... 
so send those notes in, so she has time to put the whole thing together, OK? Thanx
I sent mine 2 nights ago... The Gala will be after the
XMRV - NIH Conference, after the CFSAC and will be after WPI 's Official Opening..
so we HOPE it to be a GRAND Night... see the "previous post" about the Event.

Bless you WPI and everyone there....

2 comments:

  1. Hello. I just found your blog and so appreciate all the work you're doing to raise CFS/ME awareness.

    I wondered if you're aware that I have a book that's about to be published that is about chronic illness but focuses on CFS/ME because I write from my experience as a nine-year sufferer.

    The book is called How To Be Sick. Here's the website for it:

    http://www.howtobesick.com

    I don't know whether you'd think it's appropriate to list on the side of your blog but I know it can help a lot of people cope with this devastating illness.

    Keep writing!

    My best,
    Toni

    ReplyDelete