In this Issue

• Lobby Day
• Quick Vote
• CFS Advisory Committee Meets
• CFIDS researchers chart their progress
• What a pain!
• Conference info
• Have any tips to share?
• Living with CFIDS: Personal Stories
• Bulletin Board

Lobby Day 2005
Advocacy is a priceless tool in seeking recognition and research dollars for CFIDS. PWC Sharon Greenspan shares her Lobby Day experience and encourages other advocates to take advantage of the opportunities presented by Lobby Day. Read her story at http://www.cfids.org/cfidslink/2005/ld-may05.asp.

* To obtain registration information, visit http://www.cfids.org/advocacy/lobby-day.asp, send an e-mail to lobbyday05@cfids.org or call the Association’s resource line at 704-365-2343. Please note that the deadline to reserve hotel rooms is Monday, April 11^th.

Quick vote
What do you think is the most important reason for participating in Lobby Day? To answer today's Quick Vote question, visit the CFIDS Association of America’s homepage at http://www.cfids.org/.

CFS Advisory Committee Meets
The federal CFS Advisory Committee met on April 4, 2005, inWashington, D.C., to hear presentations and testimony on disability issues affecting CFS, as well as to receive agency reports and updates on past recommendations. A full report is available at http://www.cfids.org/cfidslink/2005/cfsac-april05.asp.

CFIDS researchers chart their progress
Progress is being made in the CFIDS research projects awarded funding by the Association during the 2004-2005 grants cycle. Updates on two of those studies are available at   http://www.cfids.org/cfidslink/2005/research-news05.asp.

What a pain!
Have you resigned yourself to dealing with pain? Does your current treatment regimen fall short? Visit http://www.cfids.org/cfidslink/2005/pain-article.asp to read “What a Pain,” an article which outlines the drug and nondrug treatment options most often used to ease the pain of CFS. Written by a clinician who has treated hundreds of CFS and FM patients, the article may be a good resource to share with your own doctor.

Conferences and Meetings of Interest
For the latest information about conferences, meetings of interest and other events for the CFIDS community, visit http://www.cfids.org/resources/conf-meetings-interest.asp.

Have any tips to share?
The Association is looking for “hot tips” for the Patient to Patient page of our website ( http://www.cfids.org/hot_tips.asp). The page, which changes daily, is an opportunity for PWCs to share tips, strategies and helpful thoughts on coping with CFIDS. Forward tips to cfidslink@cfids.org.

Living with CFIDS: Personal Stories
Many CFIDSLink readers have been sharing stories of how CFIDS impacts their lives and the lives of their families. Stories of profound loss, of anger and acceptance, of a struggle without end. In this month's column, we publish a story from PWC Margaret Robertson, who at 73 doubts that she’ll recover from her illness. Visit http://www.cfids.org/cfidslink/2005/robertson.asp to read “Accepting a New Me.”

In a second story, “From Prince to Pauper,” PWC Gerry de Gruiter shares how CFIDS eroded his professional and financial security and transformed his existence. Visit http://www.cfids.org/cfidslink/2005/gerry.asp to read Gerry’s story, and please consider sharing your own. Send your personal stories to Marcia Harmon at stories@cfids.org.

Bulletin Board
Visit http://www.cfids.org/community/bulletin-board.asp for up-to-date news and happenings within the CFIDS community.