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May - June 1999

Founder’s Forum
A dialogue with Association members

Dear Members,
 
As this issue of the Chronicle goes to press, an exciting event is taking place in Washington, D.C. Nearly 80 CFIDS patients, friends, family members and professional advocates, representing 19 states, are visiting with influential members of the House of Representatives and the Senate. In a few cases, they are making representatives aware of CFIDS; in most cases, they are strengthening members' understanding of our illness and telling them what persons with CFIDS---their constituents---need and expect from their government.

This May 12 marks the sixth annual Lobby Day organized by The CFIDS Association of America. From modest beginnings, Lobby Day has grown each year. This year, the largest group of volunteer CFIDS lobbyists ever has scheduled visits in the offices of 80 representatives and senators. For some of the participants, the effort is made at considerable risk to their health; others have made a financial sacrifice to be there. To all of them, we extend our sincere thanks.

Here are some of the requests the Lobby Day participants are making on our behalf:

  • A $1 million appropriation to the Secretary of Health to maintain the Chronic Fatigue Syndrome Coordinating Committee. We also want Congress to direct the Secretary of Health to lead the charge to rename "CFS" and to undertake a prominent educational campaign to inform the public that this is a serious and disabling illness.
  • $16 million for the National Institutes of Health to spend on extramural, or non-government, studies into promising areas of CFIDS research. We want the NIH to give priority grants to projects that will define the etiology and pathophysiology of the illness and identify diagnostic markers, and we're asking for a special grant program to study pediatric CFIDS.
  • For Congress to direct the Centers for Disease Control and Prevention (CDC) to make up the CFIDS research funds it has misspent in past years and spend that money on CFIDS over the next three years. We're also asking that the CDC be directed to conduct outreach programs to educate primary care providers about the diagnosis and treatment of CFIDS and to begin studies of the prevalence of CFIDS in minorities, children and adolescents.
  • $1 million for the Health Resources and Services Administration to expand training for health-care providers and medical students in the diagnosis, treatment and management of CFIDS patients.
  • For Congress to direct the Food and Drug Administration to streamline the approval of potentially promising CFIDS drugs and to allow CFIDS patients access to any potential treatment as soon as safety is established. The FDA also should be encouraging drug manufacturers to develop treatments for CFIDS.
  • For Congress to direct the Department of Education to inform educators about CFIDS and the special needs of students with CFIDS.

Those 80 people making in-person requests now need to be supported by the thousands of us at home to be sure their requests are taken seriously. Write letters---and ask your friends and family to write letters---to your own representatives in Congress. (Addresses and guidelines for writing can be found on page 15 of the March/April 1999 Chronicle and on our web site, www.cfids.org.) By including some of these same requests in our letters, we can all be part of the success of Lobby Day 1999.

Sincerely,

Marc M. Iverson
Chairman & Founder

Please send comments to me at the Association’s mail address and fax number, or by E-mail to chairman@cfids.org.