#81~ CFSAC Testimony- from Kassy + Video

Kassy has given me permission to repost her CFSAC Letter of Testimony that she sent in....
**********************************************************

To Wanda Jones, Executive Secretary of the CSFAC, Kathleen Sibelius, Francis Collins, Thomas Frieden and Elizabeth Unger:

I am very ill and you are very busy so I won't take up much of your time with my contribution to the public testimony for the upcoming CFSAC meeting.

Another reason for keeping this brief is that today is my son's 17th birthday. I want to devote what energy I can to making this as pleasant a day for him as possible. This is the 4th birthday he has been ill. Imagine spending your 14th, 15th, 16th and 17th birthdays---and all the days between---lying in bed: your entire span of high school years lost to constant pain.

There's so little I can do to provide comfort as I also am ill, unable to work and provide the comforts that a healthy parent can bring to a sick child, from pleasant distractions to decent medical care. In any case, there has been no decent medical care, no appropriate proven treatment, for people with our illness. But now at last promising treatment is at hand.

There is no time for us to wait. Every day that funding is delayed is another day I don't work. Every day wasted on redoing the same old studies, retracing the same old research steps, re-positing the same worn-out theories, is another day that my son lies in bed in intense pain.

The change has got to happen now for us and for millions like us. We need you to use your knowledge and positions now to make that change happen.

Not only is the link of ME/cfs to MLVs strong, not only has the research been confirmed, not only has the new research strengthened the initial evidence, not only has XMRV been proven susceptible to antiretroviral drugs already approved in treating HIV infection, but beyond all that people who have been able to do so have tried HAART and similar antiretroviral treatment and they have improved.

Can you imagine functioning for years and years at 40% of normal activity? Think of any action you feel responsible to take, anything you enjoy doing, anything you dream of doing, and cross it off your to-do list. Wash dishes? Take a vacation? Make a difference in your community? No, no, and no. Lie down and endure the pain. Can you imagine living like that?

If someone said that a drug already in use for other illnesses might restore you to 80% activity in mere months, would you not wish to try that drug? Or would you soberly insist that clinical trials and prescription approval be delayed until the pathological mechanism of the retrovirus was fully understood and independently confirmed in double-blinded studies at multiple research facilities and brought to publication and subjected to further debate?

Suppose it was your child lying in the next room, bravely trying not to worry you by moaning or complaining? I am sure you have both the compassion and the imagination to see the need. If I were well enough I would be standing right in front of you today making this demand on behalf of my child, myself, and all of us many millions, if that would make any difference. But you don't need us to stand in front of you. You know what we are all saying to you, and to our doctors, and to the press, and to our elected representatives.

Fund Clinical Trials Now.

Thank you for your attention to my brief appeal: I hope to give my son good news after your committee meets.

Sincerely, 
 ********************************************
Kassy's blog
http://itsonlymeitsnotmymind.blogspot.com/

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

#50~ CFS says BBye Reeves at CDC, ~ and Mikovits/Bell videos

My, my... there has just been TOO much News and for once "This is a GOOD Thing" my relapse from the excitement tho.. not so good.


Since my last post we have had 2 BIG Lecture/Presentations (videos below) and FINALLY after YEARS of Disgust and "United Complaints" one of our Goals to help our Research in the USA move Forward and be led by a Scientist that KNOWS something is almost
here....

"Change of leadership" ANNOUNCED for **CDC’s ~ CFS Research Program**

**********************************************************
The U.S. Centers for Disease Control and  Prevention (CDC) has announced that Dr. William C. Reeves, head of the agency’s CFS Research Program, will be taking a new position within the agency
effective Feb. 14, 2010 (Happy Valentine's Day)
and that "he will no longer lead" the agency’s CFS research. 

Dr. Elizabeth Unger will serve as  "acting chief" of the Chronic Viral 
Diseases Branch, the unit within CDC that houses the CFS Research Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC’s Office of Surveillance, Epidemiology, and Laboratory Services.

Do we need to actually mention just HOW hilarious this actually IS ?

For YEARS, he has been the one to say that WE were ONLY depressed and that there were NO biomarkers for CFS, when actually HE was probably the ONLY one that believed thatand needed "Mental Help" as he has been in Total Denial of the Truth for many decades and could USE

some Mental Health Intervention himself...  LOL

**********************
Bio of Dr. Elizabeth R. Unger

Unfortunatley, like Dr. Suzanne Vernon now with the CFIDS Association, 
Dr. Elizabeth (Beth) R. Unger PhD, MD  was originally doing research for the CDC in Human Papillomavirus Program which was under Dr. William C. Reeves. (Hopefully HE didn't have much influence over her thoughts and she kept an Open Independent Mind.)

A native of Pennsylvania, Dr. Elizabeth  R. Unger received her bachelor’s degree in chemistry from Lebanon Valley College (Annville, PA). She received her doctorate in experimental pathology and medical degree from The University of Chicago. 

After completing her residency in anatomic pathology at The University 
of Chicago and The Milton S. Hershey Medical Center, Pennsylvania State University, she was certified by the American Board of Pathology in 
Anatomic Pathology.

She was a post-doctoral research fellow of the American Cancer Society and The W.W. Smith Charitable Trust in the pathology department of The M.S. Hershey Medical Center and joined the faculty of the Emory University School of Medicine as an academic surgical pathologist in 1990. While there she was involved in several studies associating 
EBV with various cancers.

She accepted a position at the Centers for Disease Control and Prevention in 1994 and became the Team Leader of the Human Papillomavirus (HPV) Program in the Viral Exanthems and Herpesvirus 

Branch of the Division of Viral and Rickettsial Diseases, National Center 

for Infectious Diseases.

Dr. Unger’s research interests have been in molecular diagnostics, viral oncogenesis and molecular epidemiology and she pioneered colorimetric in situ hybridization methods for detection of HPV in diagnostic
samples. The HPV program utilizes a multidisciplinary team to conduct 
laboratory-based epidemiologic research to inform control strategies to reduce the incidence of new HPV infections as well  as the major HPV-associated chronic diseases such as cervical cancer and recurrent respiratory papillomatosis. They worked with the National Cancer 
Institute’s Early Detection Research Network to discover and validate novel molecular markers to improve cervical cancer screening.

In 2000, she first appeared as an author on a CFS study. Chronic fatigue syndrome is not associated with expression of endogenous retroviral p15E. Gelman IH, Unger ER, Mawle AC, Nisenbaum R, Reeves WC.Mol Diagn. 2000 Jun;5(2):155-6.

(huummmm....)

Dr. Unger is a member of the College of American Pathologist’s 

Committee on Molecular Pathology and a founding member of the 

Association for Molecular Pathology. 

She is on the Council of the American Society for Investigative Pathology and The Histochemical Society as well as a principle scientist with the 

American Society of Microbiology. She has served as an advisor to the 

FDA and WHO on HPV testing and vaccine issues. She is on the editorial board of four journals including Technology in Cancer Research and Treatment.

Centers for Disease Control and Prevention 

1600 Clifton Rd Mail Stop G41, NE
Atlanta, GA 30333.
Div. of Viral and Rickettsial Diseases
E: eru0@cdc.gov 

We PRAY she will be True to her Hippocratic Oath, unlike her predecessor. May we send her *Good Thoughts* this Valentine's Day and HOPE that she will be ever searching for the REAL cause of this nasty

disease and Help us and the  Entire world eradicate this  illness that is ruining families as well as individuals and costing ALL of our countries economies & families TONS of $$$ in loss of productive energy as we ALL

WANT to be Healthy and able to work and FEEL like functional humans

again... We are NOT "simply depressed." WE have many thing we WANT to do.. May she HELP us reach that Goal.

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

ON a Lighter note..  a "non-commercial break here" 
to Remind you.. that  People ARE getting BETTER right now
from this illness because of the Research that is being done... 
so KEEP Dreaming and Keep wishing... and your Dreams
WILL be answered.......

**********************************************************
Now for the Santa of CFS ~ God luv him ♥

 "XMRV retrovirus and CFS,  ME (Myalgic Encephalomyelitis), 

Fibromyalgia and aggressive prostate cancer" 

David S. Bell, MD, FAAP, a Harvard graduate, with an MD degree from 

Boston University School of Medicine in 1971 has come out of retirement to lecture and research XMRV (xenotropic murine leukemia virus-related virus).

The U.S. Dept. of Health and Human  Services appointed Dr. Bell to "Chair" the CFSAC committee from 2003 - 2005.

Dr. David S. Bell's XMRV Presentation
from Barborka on Vimeo

********************************************************************
On January 22, Dr. Judy Mikovits, PhD, director of research for the 
Whittemore Peterson Institute for Neuro-Immune Disease, conducted 
a 2½-hour XMRV seminar in Santa Barbara, CA.

The patient-oriented event was sponsored by the HHV-6 Foundation 
and ProHealth.com, and was introduced by WPI Founder and President 
Annette Whittemore.

This highly informative presentation and Q and A cover a multitude of intriguing details and plans that patients and researchers worldwide have been speculating about for months, since discovery of the XMRV retrovirus in ME/CFS patients’ blood was reported last October in the journal "Science."

Please BE Prepared to Concentrateso put your legs UP and get comfortable.  You can replay this later to take notes 
if you wish.... Just Listen this 1st time.


Dr. Judy Mikovits XMRV Presentation
from ProHealth on Vimeo



Dr. Judy Mikovits XMRV Q and A
from ProHealth on Vimeo

There is even MORE news to Come...but that is ALL I will put in this post.
So let this soak IN and then we will move on to the next set of news releases, OK?

If you have any opinions or comments to share..Please DO.. and PLEASE
SHARE the videos with your friends & family that need to learn MORE
about what ME/CFS is and what the discovery of XMRV means to us.