Lobby Day success
Armed with the just-released General Accounting Office (GAO) report on the federal CFS program in this issue, 57 patients and their families and friends descended on Capitol Hill on Thursday, June 22 for The CFIDS Association of America s ninth annual Lobby Day. We met with 80 members of Congress or their aides and left information with 52 other key members of Congress who were not represented by Lobby Day participants.

Our issues and requests were met with overwhelming support on Capitol Hill.  Many agreed to write letters to Department of Health and Human Services Secretary Donna Shalala asking for corrective measures to be taken to the issues raised by the GAO.

Name change group formed
The Department of Health and Human Services (DHHS) formed a workgroup under the auspices of the CFS Coordinating Committee (CFSCC) to examine the issue of changing the name of CFS.

Members of the workgroup are: CFIDS patient advocates John Herd, Carol Lavrich and Kim Kenney; clinicians Daniel Kahn, MD, Charles Lapp, MD and Susan Levine, MD; researchers Leonard Jason, PhD, Nancy Klimas, MD, and DHHS representative Arthur Lawrence, PhD.

Questions about the workgroup should be directed to Dr. Patrick McNeilly by E-mail at pmcneilly@osophs.dhhs.gov or by phone at 202/690-7694.

SSA news, resource
In June, The Social Security Administration (SSA) started using the impairment code 9330 for all cases in which CFS is found to be the primary impairment. Use of this mandatory code should improve tracking of CFS cases in the SSA system.

According to an April 6 SSA regulation, SSA must give more weight to medical opinions issued by a treating physician than to other sources. The CFIDS Associa-tion has a new booklet to help doctors write effective medical reports for CFIDS patients. The booklet is $7 (including shipping) and is available by calling the Resource Line at 704/365-2343.

NIH action
The NIH's report on the February 6-7 scientific consultation is on the web. A State of the Science meeting on CFS will be held October 23-24 in Washington. Send an E-mail to cfsciencemtg@iqsolutions.com or fax to 301/984-1473 for more information.

Congressional action
The House and Senate each passed their fiscal year 2001 health spending bills in May.

The CFIDS Association is seeking changes to be made in the conference report, which will reconcile differences between the House and Senate bills, to address issues raised by the GAO report.

CFSCC meets
The CFSCC met July 12 to discuss the GAO report; please see the Fall Chronicle for an update of events at this meeting.

The committee will also meet October 25 following the NIH CFS State of the Science meeting (see above) and in Seattle in January following the American Association for Chronic Fatigue Syndrome (AACFS).