CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of K. Kimberly McCleary

January 2007

The new year has begun with a sense of urgency and enormous potential, and I’m happy to share a few preliminary stats from 2006 and previews for what’s ahead in CFS research and public policy for 2007.

Research activity
A careful search of the medical literature in 2006 shows that 163 articles about chronic fatigue syndrome were published in English-language medical journals, with another 22 articles appearing in journals of other languages. This total represents an increase of 15% over figures for 2005, when 162 (142 English; 20 non-English) articles were published about CFS. The breadth of published studies is quite great, ranging from genetic profiles to imaging studies to cardiac abnormalities to botanical therapies to overlapping disorders to premorbid predictors and long-term sequelae. The field is certainly more challenging to follow and understand than it was 16 years ago when I first got involved with the Association!

Today the International Association for Chronic Fatigue Syndrome (IACFS) begins its 8th annual research/patient conference in Ft. Lauderdale, continuing through Jan. 14. 140 scientific papers were submitted from all over the globe and registrations have already tripled the size of this meeting compared to the most recent one held in 2004. The disciplines represented on the agenda and the packed 5-day schedule reflect great growth in the research field, too!

Research funding
The Association continues its support of four promising pilot studies in CFS, representing nearly $250,000 in funding. Since our founding 20 years ago, we’ve supported a total of $4.8 million in research, solidifying the Association’s position as the greatest source of research funding aside from the federal government. Federal spending on CFS research, according to preliminary estimates (since fiscal-year-end figures are not yet available), stood at $13 million for 2006, up 5% compared to 2005.

Seven new CFS studies approved for funding from the National Institutes of Health will begin in 2007, bringing new investigators, new ideas and more money to the field. One unique feature of these particular grants made by NIH is that all the funded investigators are required to gather annually to share information and data. This is one mechanism NIH is using to foster growth in CFS research.

Grassroots advocacy
The CFIDS Association's Grassroots Action Center was a busy site last year. 8,377 messages were sent by 1,577 activists to public health leaders, media professionals and members of Congress. In particular, CDC director Dr. Julie Gerberding heard from 1,033 people concerned about CFS and Secretary for Health Mike Leavitt received 1,067 messages from CFS advocates. 1,774 messages were sent through the Grassroots Action Center to media professionals, most in thanks for positive coverage of CFS in a variety of news outlets. The remainder of the messages went to members of Congress, with leaders of health-related committees the recipients of a large share of those messages.

Updates to the Grassroots Action Center reflect the changes to Congress that resulted from November's election and subsequent run-offs and recounts that took place in the weeks following. We'll be announcing some new features and using the Center even more vigorously in 2007 to demonstrate broad interest in CFS and secure support for expanded research and education among lawmakers and policy implementers.

Congressional opportunities
Through our Lobby Day meetings and the efforts of online advocates, we were able to generate letters signed by 41 members of Congress to Secretary for Health Mike Leavitt about the federal CFS Advisory Committee. That important committee, one of only a handful dedicated to a single disease, was renewed in September and new members will soon be announced to fill the terms of six members whose terms expired last fall.

Many of the 41 members of Congress who signed the letters to Secretary Leavitt now hold important leadership positions in the 110th Congress that began its work last week. We will hold our 15th Lobby Day on May 14-15, 2007 and hope you, or someone who loves you, will be able to take part in what is shaping up to be our best event ever. We’ll again hold a Virtual Lobby Day at the same time to involve online advocates in critical education and champion-building efforts.

Thank you for your interest and engagement in CFS research and advocacy in 2006. We hope you’ll participate in accelerated action in 2007!

K. Kimberly McCleary
President & CEO
The CFIDS Association of America