FYI from the NHLBI Index

May 2002: Vol. 3, Issue 1
Constituents' Corner

This space is reserved for you, our readers, to share ideas and broadcast opinions. We invite you to submit your comments, thoughts, and suggestions via email or snail mail (Public Interest News, c/o Office of Science and Technology , Building 31, Room 5A03, 31 Center Drive, MSC-2482 Bethesda, MD 20892-2482). We also are considering the addition of a separate "Bulletin Board" where organizations can announce upcoming activities. For now, those announcements also can be sent to the above addresses.

ATS Public Advisory Roundtable Symposium

The American Thoracic Society (ATS) Public Advisory Roundtable (PAR), which provides the ATS with a patient perspective on pulmonary and critical care medicine, will host a symposium at ATS 2002-Atlanta, the 98th International Conference (May 17-22). Scheduled for Monday, May 20 at 8:15 a.m., the symposium, "Genetic Mechanisms in Lung Disease," will be chaired by ATS Immediate Past-President and National Heart, Lung, and Blood Advisory Council Member, William J. Martin, II, M.D. Through this symposium, the PAR hopes to:

  • enlist the expertise of exemplary basic scientists in understanding the molecular and cellular pathogenesis of lung disorders,
  • focus on broad pathophysiologic concepts, rather than disease-specific topics, which are of general interest to the ATS membership, and
  • introduce the ATS membership to the missions and resources of foundations and associations that represent the ATS Public Advisory Roundtable.

Attendees are invited to the PAR Poster Session, a visual display and explanation of the lung-related not-for-profit organizations involved with ATS/PAR, following the symposium. The PAR, which focuses on issues related to patient care, patient rights, patient education, advocacy and research/research funding, is composed of not-for-profit, lung-related organizations including

  • the Alpha-1 Foundation,
  • the American Sleep Apnea Association,
  • the Asthma and Allergy Foundation of America, the LAM Foundation,
  • the Pulmonary Fibrosis Foundation,
  • the Pulmonary Hypertension Association,
  • the Sarcoidosis Research Institute, and
  • three local American Lung Association chapters.

To learn more about the PAR, go to www.thoracic.org/aboutats/par/par.asp or contact par@thoracic.org.

Article contributed by: Ms. Nancy Pietri, ATS.
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PIO Influences NIH Research Agenda

On December 11, the NIH issued a new Program Announcement (PA) on chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS). The PA is remarkable because the CFS community helped direct the priorities outlined in the announcement.

The development of the PA began in 1999, when the CFIDS Association of America launched an aggressive campaign to stimulate NIH funding of CFS research. They sought guidance from experts at NIH, and found Dr. Paul Velletri at NHLBI to be an especially welcoming partner. One of the best suggestions Dr. Velletri and others made was for the organization to host a series of meetings to establish current knowledge, identify the top areas for future exploration, and most important, introduce a new group of scientists to CFS research.

Since January 2000, the CFIDS Association of America and the NIH have collaborated on five CFS meetings. Two were funded by the NIH and three by the Association, although the organizations worked closely on all five meetings. Recommendations for future study outlined at the meetings formed the basis of the NIH PA and the CFIDS Association's grant announcements. Several non-CFS researchers who participated in the meetings entered as skeptics, but emerged with a better understanding of CFS, as well as with a desire to apply their expertise to CFS. Although engaging researchers outside of the CFS community seemed risky at the outset, the Association now believes that going outside the CFS community's circle will increase the amount and quality of CFS research funded by the NIH and other organizations, and ultimately result in the conquering CFS.

For more on The CFIDS Association's symposium series, see www.cfids.org/about-cfids/research-symposia.asp. Information about the NIH CFS Coordinating Committee is also available.

Article contributed by: Ms. Vicki Walker, the CFIDS Association of America.
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