Monday, December 14, 2009

Who do we contact?

Many people are asking who they should contact as well as some of the
questions that remain to be answered. The following are a few of the
possibly pertinent contacts as well as some issues that may not have been
widely discussed with these contacts.

To whit: there has been considerable discussion regarding Dr. Miller's
statement of October 2009 that XMRV testing will be moved to the retrovirus
lab in the Division of HIV/AIDS Prevention. What Dr. Miller did not cover
was who would be paying for the testing of XMRV in patients who may have CFS
depending on which definition is used to currently define whether they now
have CFS. According to former CDC contractor Kim McCleary of the CAA in 2008
testimony before the DHHS CFSAC, most funding for CFS is paid yearly to Abt
Associates regardless of whether they had performed the requested services.
One possible point of view is that this leaves very little money for
collaboration with external experts outside of Emory University's Psychiatry
and Behavioral Division. If the CFS program doesn't have sufficient funds to
pay for adequate and scientifically rigorous studies testing who does?

Nor did Dr. Miller did state who in the retrovirus lab would be put in
charge of any XMRV studies. This may be pertinent as both Drs. Walid *
Heneine* and Brian J. Mahy continue to work in the HIV/AIDS Prevention

Dr. Heneine was part of a team lead by Dr. Tom Folks who were unable to
reproduce the retrovirus work of Drs. Elaine DeFrietas, Dan Peterson and
Hilary Koprowski in CFS patients. Dr. Mahy is infamous for his participation
in the diversion of congressional CFS funding to other areas in the 1990s.
Dr. William C. Reeves also participated, but gained Whistle blower
protection when a 1998 GAO investigation revealed the misallocation of
research funds. Repayment of that funding has now run out and Dr. Miller
purportedly told CFS advocate Cort Johnson that additional funding had not
been requested. So who pays for it?

The suggestion was also made at the October 2009 CFSAC meeting that all CDC
XMRV lab work be done at a neutral lab and under the supervision of a
neutral entity such as the NCI. It's a win/win proposition. That way the CDC
no longer has to continue to send out emails to virologists worldwide
claiming they cannot replicate the XMRV study because they don't know who
the patients were. The CDC also avoids accusations of impropriety and
malfeasance and CFS experts and researchers are reassured that the rigorous
protocols used in the Mikovats study are adhered to. As well as verification
that only specimens from a well-defined group of CFS patients currently
matching the specifically defined CFS patients tested by the WPI and the NCI
are used.

Of course the CDC is hardly the only entity who will be testing for XMRV in
CFS patient groups. Those studies should also be shown to adhere to
established protocols and rigorously defined patient groups currently
meeting the 1994 Fukada definition and the 2003 Canadian Consensus Protocol.

These questions and others may be addressed to all or some of the following

Dr. Howard Koh is the DHHS Secretary over both the Office of Women's Health
Research and the Office of Scientific Integrity.
c/o Ms. Dinah Bembo, Assistant to the ASH
200 Independence Avenue SW, 716G
Washington, District of Columbia 20024


*The two CDC contacts listed below oversee the work done by Dr. William C.
Reeves and Dr. Michael Miller regarding CFS.


*Mitchell L. Cohen, MD*
Director, Coordinating Center for Infectious Diseases/CDC
1600 Clifton Rd NE, Bldg 1
Atlanta,  GA 30329Phone: (404) 639-1603
Fax: (404) 639-2780

Rear Admiral Ali S. Khan, MD MPH

Acting Director, National Center for Zoonotic, Vector-Borne, and Enteric
Diseases, Coordinating Center for Infectious Diseases
Centers for Disease Control and Prevention
Mailstop A‐26, 1600 Clifton Rd.,
Atlanta, GA 30333


as well as

J Michael Miller
1600 Clifton Rd NE, Bldg 1
Atlanta,  GA 30329

Phone: (404) 639-3029
Fax: (404) 639-0382

The Department of Health and Human Services also has a Board of Scientific
Counselors who interface with the Coordinating Center for Infectious
Diseases (CCID) which is the division the CFSRP is under at the CDC. Their
charter says they meet twice yearly, but the last minutes posted are from
2008. Note: Retroviruses and CFS are not usually what these people are
experts on, so links to  official documentation, testimony or direct links
to the WPI site or possible copies of CFS expert Dr. Nancy Klimas comments
from the NYT would lend credibility to any communication.

Executive Secretary is:

Janet Nicholson, Ph.D.
Senior Advisory for Laboratory Science
Coordinating Center for Infectious Diseases
Centers for Disease Control and Prevention

Members also  include:

Barry J. Beaty, BS, MS PhD; Professor; Virology
Colorado State University
Department of Microbiology, Immunology and Pathology
105 Infectious Disease Annex, Foothills Campus
Fort Collins, Colorado 80523-1692

*Barry*.*Beaty* .

B.S., M.S., Ph.D. (University of Wisconsin).

Dr. Beaty is a professor of virology and is a leading researcher at Colorado
State's Arthropod-Borne Infectious Disease Laboratory. His research has
included the prevention and control of diseases including yellow fever,
malaria, Dengue fever, West Nile virus, and mosquito-borne encephalitis.

Ralph DiClemente, PhD
Associate Director
Emory/Atlanta Center for AIDS Research
Rollins School of Public Health, Emory University
Atlanta, GA
Term: 12/27/2007 - 9/30/2010

John Lind Gittleman, Ph.D
Odum School of Ecology
University of Georgia

Gail A Bolan, M.D.
Chief, STD Control Branch
Department of Health Services
State of California
Richmond, CA
Term: 1/4/2008 - 9/30/2010

Matthew L Boulton, MD MPH (Dr. Boulton is one of the four external reviewers
of the CDC CFSRP in 2008. Both Dr. James Oleske and Dr. Gudrun Lange have
publicly criticized the CDC since then.)
Associate Professor
University of Michigan
Ann Arbor, MI
Term: 12/21/2007 - 9/30/2011

Samuel Lawrence Katz, M.D.
Professor and Chair
Emeritus of Pediatrics
Duke University Medical Center
Durham, NC
Term: 1/16/2008 - 9/30/2010

Marcelle C. Layton, M.D.
Assistant Commissioner
Bureau of Communicable Disease
New York City Department of Health and Mental
New York, NY
Term: 2/20/2008 - 9/30/2010

Robert A. Weinstein, M.D.
Interim Chairman
Department of Medicine
John H. Stroger, Jr. (Cook County) Hospital
Chicago, IL
Term: 9/2/2008 - 9/30/2012

Mary Elizabeth Wilson, M.D.
Associate Professor of Medicine
Harvard Medical School
Washington, DC
Term: 8/29/2008 - 9/30/2012



TreeClimbingHound said...

The CDC replication of XMRV has everyone concerned due to obvious reasons. Thank you for doing all this work in hunting down those possibly involved.
I do believe that at this point, whatever comes out of the CDC, re CFIDS and XMRV will have little impact on perceptions. As you pointed out, there are a number of independent labs worldwide that are doing replication so what the CDC results are will be of little to no value - as it should be at this point.
Do you suggest we peper these people with emails insisting that they not damage the results? I see the cast of characters and recognize so many names that have done so much damage to CFIDS over the decades and it scares me. But again, what THEY find will have a black pall cast upon their research - whether that research be supportive of XMRV-CFIDS connection or not.
Thank you for all this information. It was informative. Job well done. Sharon.

CFS Facts said...

I can't take credit for the work; I simply re-posted what someone else wrote.

Unfortunately, CDC is still the international leader in medical statements, so I wouldn't entirely write off their influence on this subject. They're not going down without a fight.

But I would hope that the fact that the NY Times has picked up on XMRV=CFS and published several things since the first announcement will keep that concept in the forefront, and that now that our experts are finally being quoted in the Times, they keep hammering on the fact that there have been 5000+ previous studies showing biological abnormalities in CFS; it's not just XMRV. That even if the XMRV connection doesn't pan out, there's still all that other evidence that it's not just depression or stress or aftermath of abuse, or any of the other ridiculous things CDC has tried to attribute it to, so they won't have to admit to another AIDS-like illness they can't fix.

TreeClimbingHound said...

Sadly I have very little faith that Dr. Jerry Holmberg of the HHS Office of Public Health and Science who will be the coordinator for the interagency group on XMRV in the blood supply will be of much value.
I have great fears that many of these people KNEW that there were at least one if not two or even MORE Retroviruses in the nation's blood supply for the past three plus decades and kept it secret for fear of the damage to their own careers/reputations and that of the Federal agencies involved (DHHS, CDC, NIH, etc).
I am NOT into conspiracy theories, was not much of an X-FILES fan, BUT our nation's history has shown us that Federal agencies are indeed capable of using their own population as test subjects (The Tuskegee Syphilis Study of 1930/2, Chem Trails in our skies noted throughout the US by those that KNOW what a Chem trail looks like and means, etc.)
So, no faith that our nation's blood supply is safe from these "new" viruses - or will be safe from henceforth from these and other viruses. Sad commentary from someone who spent years getting degrees in Pub Policy, Gov't, National Security and then supporting the Fed agencies pre-CFIDS. Sad indeed.
HHS Coordinating Xenotropic Murine Leukemia Virus-Related Virus (XMRV) Scientific Activities
-The U.S. Department of Health and Human Services (HHS) has formed an interagency scientific working group on XMRV. The Blood XMRV Scientific Research Working Group will report to the Department’s Blood, Organ and Tissue Senior Executive Council through established mechanisms. No formal statement has been issued yet, but the working group includes representatives from the DHHS Office of Public Health and Science, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA). The working group will have scientific responsibilities for investigation of XMRV as it relates to the blood supply and CFS. Suzanne D. Vernon, PhD, the CFIDS Association’s scientific director, has been asked to participate in the XMRV scientific working group.
Dr. Jerry Holmberg. Dr. Jerry Holmberg of the HHS Office of Public Health and Science made a brief presentation on Oct. 30, 2009 to the DHHS CFS Advisory Committee. He described the existing response systems that address threats to blood safety, such as new and emerging infectious agents like XMRV. The HHS Blood XMRV Scientific Research Working Group will be chaired by a representative of the NIH’s National Heart, Lung and Blood Institute (NHLBI) and will collaborate closely with the agencies in charge of these systems, including the NHLBI’s Retrovirus Epidemiology Donor Study (REDS). REDS was created in 1989 to address risks associated with HIV-1, HIV-2, HTLV-1 and HTLV-2 in the general blood supply.
In more recent communications with Dr. Holmberg, he stated that the Blood XMRV Scientific Research Working Group is taking a three-stage approach to its handling of the issues related to XMRV and the possible link to human disease. The immediate focus is to ascertain any risks to the general blood supply that XMRV might pose, but the scientific working group is also addressing validation studies for diagnostic tests and if necessary, potential blood screening tests. If the studies indicate that screening is required for blood products, blood screening tests, must be submitted to and approved by the FDA before they can be marketed. Neither of the tests currently being offered by two commercial labs has been reviewed by the FDA.
more but had to keep under 4kcharacters.

TreeClimbingHound said...

I believe that the American public's faith in the CDC is waning in all areas. Many believe that the constant scares of Swine Flu, Bird Flu, SARS and so on are hyped to get federal funding and to justify their existence.
But you are right: some people still do believe some of what comes from the CDC and that is not good for us sick. But again, let's remember that many other labs worldwide are doing the replications and the scare that this virus (and maybe the DeFreitas virus too) are cancer-causing viruses (Prostate cancer) and may well be involved in many more cancers and even diseases. So, with the CANCER word involved people will be scared and will pay attention to the results, etc.
We shall have to see...
Let us hope that these viruses are not in the blood supply. I do not want to see other's live the life I have lived for 15 miserable years. Not even my very worst enemies.

CFS Facts said...


I'm also not a big conspiracy theorist, but some of the conspiracy theories about CFS sound far more plausible than the average conspiracy theory.

The one conspiracy theory that I do buy into is the one espoused by Peterson/Cheney, that the reason FDA won't approve Ampligen is because they won't call CDC liars by approving an anti-viral to treat a disease CDC says is purely psychiatric. Ampligen won't ever be approved for "CFS", but we're hoping that it'll be approved for this new disease called XMRV.