Following the recent report of a link between CFS and the XMRV, NJCFSA Trustee Emeritus Mary Ellen McNamara initiated a series of emails with the National Institute of Allergy and Infectious Diseases (NIAID). They are reproduced here with permission.

April 16, 2010

Dr. Anthony S. Fauci, Director, NIAID
Building 31—Claude D. Pepper Bldg, 7A03
31 Center Drive
Bethesda, MD 20892

SUBJECT: XMRV Discovery in ME/CFS Patients

Dear Dr. Fauci,

Discovery of the retrovirus, XMRV, in 67% of ME/CFS patients was reported six months ago (Science, October 23, 2009) Based on your HIV expertise and responsibility for NIAID’s research program, would you kindly answer the following questions about the discovery before the May 10, 2010 HHS Chronic Fatigue Syndrome Advisory Committee meeting. On behalf of the ME/CFS patient community, the questions and your responses will be posted online.

  1. What is your current position on ME/CFS? In “AIDS or Chronic Fatigue? Linking a New Mystery Illness to an Old One,” (Newsweek, 9/7/92) you predicted unusual viruses isolated in ME/CFS would turn out, on close inspection, to be innocent bystanders. Do you still maintain this belief in light of the XMRV discovery?
  2. In response to the XMRV discovery, what groundbreaking retrovirus science and technology from the past 30 years will NIAID apply to the study of ME/CFS pathogenesis and clinical management, and who on your staff will spearhead this?
  3. How much NIAID funding and manpower will be allocated to ME/CFS to study the role of infectious agents-- bystander or not—and the cause of immune system activation/damage in this severely disabling disease? What ME/CFS clinical trials will NIAID initiate?

You have made valuable contributions to HIV science and medicine saving millions of lives worldwide. At NIAID you can help the casualties of another infectious/immune system illness, ME/CFS. I hope you and your staff will respond to their needs as well.

Sincerely,

Mary E. McNamara
VP & Director of Research, Emeritus
New Jersey CFS Association, Inc.

 


Dear Ms. McNamara,

I am responding on behalf of Dr. Anthony S. Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID), to your April 16, 2010 letter regarding the possible role of xenotropic murine leukemia virus-related virus (XMRV) in Chronic Fatigue Syndrome (CFS). I am a Program Officer in NIAID’s Virology Branch within the Division of Microbiology and Infectious Diseases with responsibility for research on non-HIV retroviruses, and am pleased to respond to your letter.

The potential retroviral link between XMRV and CFS is an interesting, albeit unconfirmed, association. To date, there are no data to suggest causality. Nonetheless, there has been significant interest on the part of the research community to investigate this issue further. To that end, NIH has seen an influx in the number of XMRV-related research applications submitted in response to the ongoing NIH Program Announcement for CFS (see: http://grants.nih.gov/grants/guide/pa-files/PA-08-246.html), as well as through NIH investigator-initiated channels. In my own program, I have seen considerable interest and energy among investigators who are committed to further investigating this issue.

The National Cancer Institute, another component of the NIH, is leading the NIH XMRV research effort and has created a website devoted to this topic (http://www.cancer.gov/newscenter/pressreleases/XMRV_QandA). I encourage you to contact NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) to secure additional information about their XMRV research activities. In addition, you may want to contact Dr. Eleanor Hanna in the NIH Office of Research on Women’s Health, who coordinates the Trans-NIH Working Group on CFS (http://orwh.od.nih.gov/cfs.html) to ensure that a multidisciplinary and integrated approach encompassing the missions of many NIH ICs is brought to bear on CFS. Dr. Hanna also coordinates the Trans-NIH Program Announcement I referred to earlier, and may have additional information about NIH’s CFS research effort. Dr. Hanna’s contact information is 301-435-1573 and hannae@nih.gov.

As you may be aware, all grant applications must undergo review through the NIH peer review process, which is designed to evaluate and rate the scientific and technical merit of research applications. Funding decisions are based on the outcome of this process. Peer review of applications submitted to the NIH takes place in multiple steps. The initial step of the peer review process takes place in Scientific Review Groups. The second level of peer review is carried out by the NIH National Advisory Councils, which are composed of scientists from the extramural research community and public representatives. More detailed information on the NIH peer review process can be found at http://grants1.nih.gov/grants/peer/peer/htm.

We appreciate your interest and support in NIH’s research programs. I hope that this information is helpful to you.

Best Regards,

Eunchung Park

 

Eun-Chung Park, PhD, MPA
Program Officer, Virology Branch, DMID, NIAID, NIH, DHHS
6610 Rockledge Dr. Rm 5134
Bethesda, MD 20892-7630 (20817: Express Mail Only)
PH: 301-402-0071 (Direct) 301-496-7453 (Main) FAX: 301-480-1594

 


 

April 26, 2010

Eun-Chung Park, PhD, MPA
Program Officer, Virology Branch, DMID, NIAID, NIH, DHHS
6610 Rockledge Dr. Rm 5134
Bethesda, MD 20892-7630

Dear Dr. Park,

Thank you for your timely response to my April 16th letter to Dr. Fauci.

I am very pleased to learn that investigators in the Virology Branch are committed to studying the reported link between XMRV and CFS; NIH has received an influx of XMRV-related grant requests; and most importantly, investigators in your program are enthusiastic about their investigations. I also appreciate the NIH links and contact information you provided.

The patient community is following XMRV developments with great interest as the science unfolds. In response to the XMRV discovery, the New Jersey CFS Association (www.njcfsa.org) has invited Dr. Judy Mikovits, Director, Whittemore Peterson Institute and our longtime Medical Advisor, Dr. James Oleske, to speak at our annual patient and physician conference co-sponsored by Monmouth Medical Center. We would like to extend an invitation to both you and Dr. Fauci to attend the conference to be held on October 17, 2010 in Eatontown, NJ and will send additional information in the coming months as it becomes available.

Thank you again for your response and for providing very helpful and encouraging information about your work.

Best regards,

Mary E. McNamara
VP & Director of Research, Emeritus
New Jersey CFS Association, Inc.
 

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