Email addresses for nih dir, fda comm, and cdc dir - email them now on xmrv

muffin

Senior Member
Messages
940
Likes
15
1) National Institutes of Health (NIH)
Dr. Francis S. Collins, NIH Director francis.collins@nih.gov 301-496-2433

2) OFFICE OF THE COMMISSIONER, COMMISSIONER OF FOOD AND DRUGS (FDA)
Margaret A. Hamburg, M.D. (Commissioner of Food and Drugs) margaret.hamburg@fda.hhs.gov

3) Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/
Thomas R. Frieden, MD, MPH ftdh@cdc.gov
Director, Centers for Disease Control and Prevention
Administrator, Agency for Toxic Substances and Disease Registry
 

judderwocky

Senior Member
Messages
327
Likes
3
1) National Institutes of Health (NIH)
Dr. Francis S. Collins, NIH Director francis.collins@nih.gov 301-496-2433

2) OFFICE OF THE COMMISSIONER, COMMISSIONER OF FOOD AND DRUGS (FDA)
Margaret A. Hamburg, M.D. (Commissioner of Food and Drugs) margaret.hamburg@fda.hhs.gov

3) Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/
Thomas R. Frieden, MD, MPH ftdh@cdc.gov
Director, Centers for Disease Control and Prevention
Administrator, Agency for Toxic Substances and Disease Registry

SIGN THIS PETITION:
http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress
 

glenp

"and this too shall pass"
Messages
776
Likes
19
Location
Vancouver Canada suburbs
I sent a very simple letter to all those 3-- thankyou for posting muffin

Dear Dr Freden



I recently wrote asking asking when results of the XMRV testing would be released. Why is it not being released? Why is Dr. Alters study not being publshed? Why was the dutch study published even though xmrv was found by wpi in their negative samples? Why is this all "closed door" we as taxpayers have the right to know. We the taxpayers are paying.



Would you please answer my questions



Thank-you
 

dsdmom

Senior Member
Messages
396
Likes
49
Does anybody have a contact (other than wanda jones, who I already sent an email to) at the HHS? I think we should contact (or bombard, as the case may be) them to find out why they are suppressing these other papers.
 

dsdmom

Senior Member
Messages
396
Likes
49
I emailed Dr Collins and Dr Hamburg - but out of curiosity, what are others saying in an email to the CDC? I don't have anything to say to them - I am not in the mood to push them to publish a negative study and I'm not sure that (this time) they are behind trying to hold back the other study from coming out.
 

judderwocky

Senior Member
Messages
327
Likes
3
Does anybody have a contact (other than wanda jones, who I already sent an email to) at the HHS? I think we should contact (or bombard, as the case may be) them to find out why they are suppressing these other papers.
If you can find the contact info for them... ill plug it into the petition, so they will get the messages as well
 

Hope123

Senior Member
Messages
1,252
Likes
1,071
Write Dr. Koh

Dr. Howard Koh attended the CFSAC meeting in May as a representative of DHHS (he is an Assistant Secretary) and appeared to be open to working with the CFS community. Well, here's his chance to shine! I think oftentimes, it's about reaching the right person. Write him about DHHS suppression of publication of the CDC and FDA/NIH XMRV studies.

Here is his contact info - although it says Harvard, the contact info leads to his secretary at DHHS so it's not as though he would be bombarded personally if we wrote:

http://www.hsph.harvard.edu/faculty/howard-koh/

Dr. Koh at CFSAC: (1 part of 3)
http://www.youtube.com/watch?v=0USH...A7ECD72CD&playnext_from=PL&playnext=1&index=1
 

Otis

Señor Mumbler
Messages
1,117
Likes
117
Location
USA
Has anyone found contacts at DHHS? At this point this goes at least that high.
 

muffin

Senior Member
Messages
940
Likes
15
1) National Institutes of Health (NIH)
Dr. Francis S. Collins, NIH Director francis.collins@nih.gov 301-496-2433

2) OFFICE OF THE COMMISSIONER, COMMISSIONER OF FOOD AND DRUGS (FDA)
Margaret A. Hamburg, M.D. (Commissioner of Food and Drugs) margaret.hamburg@fda.hhs.gov

3) Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/
Thomas R. Frieden, MD, MPH ftdh@cdc.gov
Director, Centers for Disease Control and Prevention
Administrator, Agency for Toxic Substances and Disease Registry

SIGN THIS PETITION:
http://healthcare.change.org/petitio...ce_to_progress
 

muffin

Senior Member
Messages
940
Likes
15
BIG HUGS Rrrr!!!

I think emailing Sebelius is the big one now. Inundate her so she knows we are watching and so are the journalists and others.
 

glenp

"and this too shall pass"
Messages
776
Likes
19
Location
Vancouver Canada suburbs
ty muffin I emailed them again - the link for the cdc email is not correct

I did short and simple

Hello



Would you please tell me how I might go about in helping to have the XMRV possitive study by Alter, published. I believe that the public has a right to know



Thank you
 

judderwocky

Senior Member
Messages
327
Likes
3
I think emailing Sebelius is the big one now. Inundate her so she knows we are watching and so are the journalists and others.
Just want to let everyone know that every time someone signs the petition it goes out to all three of those offices... and the PNAS office... and the whitehouse... and the individuals reps and senators.

we're up to 358

:)
 

muffin

Senior Member
Messages
940
Likes
15
Judder - YOU are the Man!!!!

What a great idea, as I have kept saying over and over to you. Thank you.

I think you will hit the 500 mark and blow past it soon. Did we post it on Prohealth and the other CFIDS sites? Think I may link it to TOPIX so that it shows up in Google Alerts, etc.

Why do we need the CAA when we have smart folks like you????

Big hugs - Muffin
 

citybug

Senior Member
Messages
538
Likes
38
Location
NY
Kathleen Sebelius
Secretary HHS
Room 120F

Internet e-mail Kathleen.Sebelius@hhs.gov

DHHS
Phone..........: 1-866-699-4872
Postal address.: 200 Independence Ave. S.W. Washington, D.C. 20201

Web site.......: http://www.hhs.gov/
Keywords.......: health;welfare;grants;medicare;medicaid

Mission
The Department of Health and Human Services is the United States government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.

President Obama's Science Advisor, John Holdren, at AskDrH@ostp.gov

We should also demand the CDC stop spending CFS research dollars on their "revised" definition of CFS.


Here is Collins address too

Dr Francis Collins
E-mail: francis.collins@nih.gov
Location:

Building 1 - Shannon Building, 126
1 Center Dr
Bethesda, MD 20892

Phone: 301-496-2433
 

citybug

Senior Member
Messages
538
Likes
38
Location
NY
Write to US Congress for Mandated funds for XMRV and CFS Research

It's not getting done by the CDC lets ask for Congressionally Mandated Research Funds. They have patient advocates on the review boards.

From Nancy Klimas http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx
You go to Congress, they can actually put aside money and there is one really important tool they have. There is something called the Office of Congressionally Mandated Research. This is an Army office. It comes out of the DOD budget, a very healthy budget one might say. The Office of Congressionally Mandated Research and that is absolutely the place where advocacy can put real committed dollars to an illness.

In fact my research right now is funded through the DOD (Department of Defense), Gulf War Illness, through the Office of Congressionally Mandated Research. They are wonderful people, they are very professional, they know how to do peer review properly, they know how to get money into the hands of people who will really spent it in a and boy do they watch how you spend it.

http://cdmrp.army.mil/about/fundingprocess.shtml
Funding Process

The Office of Congressionally Directed Medical Research Programs (CDMRP) is funded through the Department of Defense (DoD), via annual Congressional legislation known as the Defense Appropriations Act. For most programs, the DoD sends a multi-year budget request to Congress in the form of the President's Budget. However, dollars for the CDMRP are not considered part of the DoD's core mission, and are therefore not included in the DoD's requested budget. Rather, the dollars to fund CDMRP are added every year during the budget approval cycle by members of the House or Senate, in response to requests by consumer advocates and disease survivors.

For more information, contact the CDMRP staff, or see the FAQs on this website.
http://cdmrp.army.mil/cwg/faq.shtml#1
# Why is the Department of Defense involved in funding this kind of research?

In 1992, a highly visible lobbying campaign by grassroots advocacy organizations, primarily the National Breast Cancer Coalition, increased awareness among policymakers of the need to expand funding for breast cancer research. These consumer groups emphasized the need to fund research in ways that were different from those employed by traditional medical research organizations such as the National Institutes of Health. In response, the United States Congress allocated specific funds for breast cancer research in the Department of Defense appropriations budget. The Department of Defense was chosen because of its long history in performing medical research studies and because its administrative structure was designed for flexible and quick responses to changing needs and priorities. The success of this effort has resulted in an increase in the number of disease research programs for which Congress has mandated funding through the Department of Defense. As of 2009, many new programs have been added to CDMRP�s portfolio and include Peer Reviewed Cancer, Orthopedic, Spinal Cord and Lung Cancer.