Out & About

The Association will take part in a one-day conference organized by Sarah Lawrence College for health advocates in research. The January 14, 2005 session will bring together national organizations and advocates interested in building collaborations and fostering dialogue on a number of issues of crucial interest to those concerned about research funding and policy for health/diseases. Various approaches to advocacy, ethical considerations in clinical trials, transparency and accountability will be addressed by leading academics, health coalition directors, non-for-profit leaders, and lobbyists; attendance is limited to facilitate discussion and interaction by all participants. Kim McCleary, the Association’s President & CEO, will represent the CFIDS Association at this meeting.

Each year, the National Heart, Lung and Blood Institute (NHLBI) sponsors a two-day meeting of public interest organizations that have a "stake" in its research programs. This year, Kim McCleary will participate in this session, scheduled for Feb. 8-9, 2005, to network with other advocates, learn of the institute’s funding priorities and programs, and share concerns about funding issues in light of shrinking federal resources for medical research. NHLBI, one of the institutes of the National Institutes of Health, funds several CFIDS studies; its interest originally stemmed from a 1995 report of problems with orthostatic tolerance and blood pressure control in some CFIDS patients published by Dr. Peter Rowe and colleagues at Johns Hopkins University.

The next meeting of the Department of Health and Human Services CFS Advisory Committee is scheduled for April 4, 2005 in Washington, D.C. The committee will focus testimony and discussion on issues of disability related to CFIDS.