Communication with CDC on Blood Supply Safety
I'm new here but not new to 'CFS.'
I thought some might be interested in the e-mail I sent to my the CDC, my congressman, and my senators:
Dear Dr. Thomas R. Frieden, Director, Centers for Disease Control and Prevention:
I have searched the CDC.gov website and I can find nothing on the recently identified XMRV retrovirus (and the association with either some prostate cancers or Chronic Fatigue Syndrome - there is one brief mention in the CFS 5 year plan, a suggestion by an outside group that XMRV needed to be looked into). The NIH-National Cancer Institute has recently posted a web-page on XMRV:
http://www.cancer.gov/newscenter/pressreleases/XMRV_QandA.
Among other issues, the NCI discusses possible routes of transmission (see item #5 - How is XMRV transmitted?) and advises people who may be infected (prostate cancer and CFS patients) that "it might be prudent for potentially infected individuals to refrain from donating blood." Doesn't the CDC have a duty to protect the pubic at large as well as to give guidance to those who, with good intentions, may inadvertently be putting others at risk?
What is the CDC's position on blood donation and this recently identified retrovirus?
I would very much appreciate a response to this e-mail.
I am sending a copy of this e-mail to my Congressional Representative as well as to my Senators.
Sincerely,
XXXXXXX
cc:
Congressman Jim Matheson - UT Second District (c/o Robert Roake)
Senator Orrin Hatch - UT
Senator Bob Bennett - UT (c/o Jessica Christopher)
I then followed that with e-mails to each representative:
Dear Senator Hatch,
As you may or may not know, the CDC has a long history with Chronic Fatigue Syndrome and from my perspective, most of it is not something to be proud of. For years, the CDC has ignored and even placed roadblocks in the way of significant and meaningful work on this disorder. Recently the NIH-NCI, Cleveland Clinic and the Whittemore-Peterson Institute at the University of Nevada-Reno published a study in 'Science' showing not only that 67% of a carefully defined group of CFS patients is infected with this new retrovirus but that 4% of the controls (general population) are infected with this retrovirus. The finding of this retrovirus in the general population is consistent with other recent studies of patients with the most aggressive forms of prostate cancer.
WPI -
http://www.wpinstitute.org/xmrv/index.html
NCI -
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv
Cleveland Clinic -
http://my.clevelandclinic.org/news/...ial_retroviral_link_between_xmrv_and_cfs.aspx
Cleveland Clinic Conference -
http://www.cleveland.com/healthfit/index.ssf/2009/11/cleveland_clinic_conference_pu.html
Science - "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome"
http://www.sciencemag.org/cgi/content/abstract/1179052?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci
While the CDC may not care about a million people in the US that they blithely dismiss as having a psychosomatic disorder, they do have a duty to everyone in this country to protect them from the potential transmission of a communicable disease. This is a responsibly that the NIH-NCI seems to have taken seriously but to which the CDC turns a blind eye as they cling to their presumptions and dogged dismissals of the last several years' worth of research showing a neuroimmune etiology for a large subset of CFS patients. The NIH-Chronic Fatigue Syndrome Advisory Committee Meeting held on 10/29/09 and 10/30/09, while lengthy was nothing short of paradigm changing in that several scientists testified that what they were seeing in their present research was very similar to what they saw in the early days of HIV. On day one of the meeting, the CFSAC felt strongly enough about what they had heard that they invited Dr. Jerry Holmberg, Senior Adviser for Blood Policy, Office of the Secretary of Public Health and Science, HHS (
http://www.hhs.gov/ophs/bloodsafety/contacts/contactus.html) to testify the very next day. Dr. Holmberg stated he was well aware of the recent research on XMRV and that the HHS was "taking measures to ensure that we would not have a repeat of what we saw in the early 1980's."
I was diagnosed with 'CFS' in 1994. 'CFS' is not just being tired. The CDC adopted the name 'CFS' in order to downplay the seriousness of this disorder. I am being treated at the Stanford Medical Center's Department of Infectious Disease. According to my doctor and my blood tests, my immune system is failing, I have numerous recurrent opportunistic infections and significant neural damage. Believe me when I say that you do not want this disease. I was a regular blood donor until 1994. At that time I stopped donating because of a concern that I might pass on whatever was causing my health problems. You also need to know that some in the CFS community are angry enough with the CDC to suggest that all CFS patients donate blood to force the CDC into acknowledging this disease and the recent findings. I could not disagree more with this tactic but it does suggest the degree of frustration with the CDC.
I am asking that you and your advisors simply remain aware of the actions of the CDC and while doing so keep an eye on the rapidly emerging changes in what is known about the causes of 'CFS.' Federal funding for this disease has been sorely lacking. We are now at a moment in history when enough has been discovered by private institutions (WPI) to create a solid foundation upon which to build.
I very much appreciate your time.
Sincerely,
XXXXXXXXX
Here is the CDC's reply:
> Thank you for your inquiry to CDC-INFO. In response to your request for information on blood donation and the XMRV retrovirus, please refer to the following information. > > Please note that the U.S. Food and Drug Administration is responsible for the safety of the nation's blood supply. Please contact the agency for information on blood donation policies:
>
> You may contact the FDA at 1-888-INFO-FDA or through their website at:
http://www.fda.gov
>
> Additional information may be available on the FDA website:
>
> The Center for Biologics Evaluation and Research (CBER)
>
www.fda.gov/cber/blood.htm > > FDA/CBER - Blood Frequently Asked Questions (FAQs)
>
www.fda.gov/Cber/faq/bldfaq.htm
>
> FDA/CBER - Blood
>
www.fda.gov/CbER/blood.htm > > The CDC website provides basic facts about chronic fatigue syndrome (CFS) and ways to treat it. There are materials on the website for patients and doctors as well as scientific publications. We also provide links to other Federal websites for CFS:
> > Understanding Chronic Fatigue Syndrome: A Guide for Patients
> National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Division of Viral and Rickettsial Diseases
>
http://www.cdc.gov/cfs/pdf/UnderstandingCFS.pdf
>
> Recognition and Management of Chronic Fatigue Syndrome: A Resource Guide for Health Care Professionals
> National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Division of Viral and Rickettsial Diseases
>
http://www.cdc.gov/cfs/pdf/HCPManaging.pdf
>
> CDC Resources
> Chronic Fatigue Syndrome
> National Center for Zoonotic, Vector-Borne, and Enteric Diseases, Division of Viral and Rickettsial Diseases
>
http://www.cdc.gov/cfs/
>
> External Resources
> Chronic Fatigue Syndrome Advisory Committee
> Department of Health and Human Services
>
http://www.hhs.gov/advcomcfs/
>
> National Women's Health Information Center
> Department of Health and Human Services
>
http://www.womenshealth.gov/faq/chronic-fatigue-syndrome.cfm
>
> Health Finder
> United States Department of Health and Human Services
>
http://www.healthfinder.gov/scripts/SearchContext.asp?topic=171
>
> Trans-NIH Working Group for Research
> National Institutes of Health
>
http://orwh.od.nih.gov/cfs.html
>
> Thank you for contacting CDC-INFO Contact Center. Please do not hesitate to call 1-800-CDC-INFO, e-mail
cdcinfo@cdc.gov or visit
http://www.cdc.gov if you have any additional questions. >
> CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR). This service is provided by Vangent, Inc. under contract to CDC and ATSDR.
>
> ---------------------------------------------------------------------------------------------
>
> Please visit CDC-INFOs Customer Satisfaction Survey and tell us about your recent experience with CDC-INFO. The survey results will help improve our services. The address for the survey is
http://www.emtservices.org/cdcinfo/en/email_satisfaction_survey.htm. Thank you.
>
> L3RAM, 5820/vv
> >
And finally, my response to the CDC's response:
Apparently Wanda Jones, Deputy Assistant Secretary for Health (Women's Health), HHS, does not feel that this is simply an FDA issue. In the following e-mail she specifically names the CDC as one of three federal agencies tasked with ensuring the safety of the nations blood supply.
> Sent: Thursday, November 26, 2009
> FDA, NIH, CDC--the agencies responsible for blood safety, as well as
> several non-Federal groups. The team is drawn from the retrovirus
> expertise of the agencies. They are developing several "panels" of
> thousands of samples drawn from blood donors, from CFS patients,
> people with other diagnoses, etc. They are taking fresh as well as
> repository whole blood samples, not serum. They have standardized
> reagents, working with Judy Mikovits. The work is just beginning.
> Wanda K Jones, DrPH Deputy Assistant Secretary for Health (Women's
> Health)
> US Department of Health and Human Services
> 200 Independence Ave SW
> Washington, DC. 20201
> Ph 202 260 4432
> Fx 202 401 4005
Also, your reply states "The CDC website provides basic facts about chronic fatigue syndrome (CFS) and ways to treat it. There are materials on the website for patients and doctors as well as scientific publications."
And yet there is nothing on the 'Science' article linking XMRV to CFS (
http://www.sciencemag.org/cgi/rapidpdf/1179052v1.pdf?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci), while a prominent link about a dubious article co-authored by William Reeves remains (News & Highlights - New Publication Linking Sexual Abuse and CFS). Given the 'Reeves 2005' definition of CFS I would expect 'CFS' to be linked with almost anything.
I have to say that the CDC seems more interested in self-promotion than in disseminating current and relevant scientific information.
Most Sincerely,
XXXXXXX
cc:
Congressman Jim Matheson - UT Second District (c/o Robert Roake)
Senator Orrin Hatch - UT
Senator Bob Bennett - UT (c/o Jessica Christopher)
Most of this transpired before I came across this group.
Any thoughts?
Shane