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Deborah Bryant, Diane Provenza and I were in Washington on June 21st and 22nd to participate in the 9th Annual CFS Lobby Days, organized by the CFIDS Association of America (CAA). Over 60 people from 18 states gathered for an afternoon of training. This was in preparation for a total of 184 appointments with senators and representatives the next day - one fourth of all those in congress! It was an extremely exciting and meaningful trip. It was also exhausting, even with the use of wheelchairs, but worth every day in bed afterward. 

The following report is so lengthy and filled with details that those with "brain fog", pain and limited energy may find it challenging to read. But it's these details and this laborious political process that can eventually make all the difference for those of us who suffer from CFS. One of the most significant realizations was how important it is for those in Congress to hear from constituents back home who have CFS. Nothing makes a congressman, congresswoman, or staffer more responsive to our visits and requests than to have heard from you in the days, weeks, or months before Lobby Day. Your letters and phone calls requesting increased research funds (and better research) pave the way for us and greatly influence the response we receive.

Kim Kenney, CAA president and CEO, and professional lobbyist Tom Sheridan led a very effective five-hour training session, along with their staff. Personally, I continue to be amazed at Kim's breadth of knowledge and the depth of her commitment, and do not believe we could have a better advocate. 

When Kim introduced Tom Sheridan she gave us some background of which I had been unaware and found impressive. Tom worked for many years as a very effective, high profile AIDS lobbyist on the Hill. In the early nineties, just as Tom decided to start his own lobbying firm dedicated to non-profit health groups, the CAA was asked to assume the advocacy efforts of a national CFS organization that was disbanding. The CAA was one of Tom's first clients, meeting around his kitchen table. He has been invaluable. Kim recalled walking through the capitol with Tom and being stopped constantly as politicians, staffers, and lobbyists asked Tom for advice or information. He is well connected and very, very effective. He and his staff seem to know everyone, and know how to best accomplish things. Much larger health networks (cancer, heart, etc.) have been amazed at what a small group like ours has accomplished, most notably the new Social Security Ruling on CFS. (Changes in a government entitlement program are viewed as nearly impossible.) 

Both Kim and Tom expressed disappointment in the limited scope of the GAO Report; namely, it did not address the quality of the CFS research or the bias that exists towards psychiatric issues. Despite its limitations, it was still a powerful tool to take into our meetings on the Hill because it did document problems at three institutions: the CDC, NIH and DHHS. 

At the NIH (which typically has a larger budget for CFS than the CDC) the GAO report noted: 

1. The amount spent on CFS has declined since '96; 
2. There have been no "program announcements" on CFS, which are a means of attracting new scientists and stimulating new research; and 
3. Their intramural (or in-house) CFS program has been closed.

1. The diversion of 12.9 million dollars of CFS research funds; 
2. No study of adolescents has taken place despite several congressional directives (no money was the first excuse!); 
3. CFS research has shifted from permanent employees to part-time employees, most of whom are students or lab technicians; and 
4. Overhead at the CDC averages an astonishing 45% of all their expenses.

Although its purpose is to coordinate, the government members do not use it to coordinate activities, resulting in duplication of efforts and gaps in the overall program. Recommendations made by the CFSCC and requests for information, particularly from the non-governmental members, go unheeded. Patient advocate members, including Kim Kenney, have not been provided timely access to information needed to serve the committee and the CFIDS community. 

On June 22nd we met with the staff of Texas Senators Phil Gramm and Kay Bailey Hutchinson, the staff of Texas Representatives Tom Delay and Joe Barton, and with Representative Ralph Hall himself. (We had been advised not to feel slighted at meeting with staff. Often, especially if they specialize in health concerns, they are better informed, and their recommendations carry great weight. In some instances it's actually more fruitful to meet with staff.) We also dropped off material at the offices of three other representatives. 

At each visit we each briefly introduced ourselves, mentioned what we did before CFS (teacher/missionary/pastor, software engineer, journalist/ mall manager), and told our story of being disabled. We announced that the GAO report had been released, shared the deficiencies found in the three agencies, asked for four specific actions, and thanked them for several positive events that had occurred, often as a result of congressional action. 

The requests included: 

1. Monitoring the CDC's restoration of the 12.9 million dollars to CFS; 
2. Maintaining the strong language in the Senate and House Appropriations bills; 
3. Requesting more money from the NIH and demanding a pro-active plan from them to stimulate extramural research (done by scientists outside the NIH), said plan to be developed as a result of the State of the Science meeting on CFS being held in October by the NIH; and 
4. Asking if their office would send a letter to Donna Shalala, the Secretary of the DHHS, requesting that the CFSCC operate in a manner consistent with all the other coordinating committees: with a nongovernmental chair and governmental members not voting.

1. The hard line Congress took with the CDC, forcing them to restore all the diverted CFS money; 
2. The Social Security Ruling recognizing CFS as a disabling condition; 
3. The scheduling of the CFS State of the Science meeting in October that could set policy and priorities for several years - this resulted from protests by the non-governmental members of the CFSCC and other patient advocates over an earlier poor attempt at a meeting this year; and 
4. Moving the new ICD code (used by insurance companies) from the miscellaneous category of "Other signs and symptoms" to "Diseases of the Nervous System". 




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HOW DID THEY RESPOND? 

All were attentive and interested, indicating that if that the CAA sent a draft of a letter to Shalala, they would certainly pursue sending it. Most offices, especially Senator Hutchinson's, seemed familiar with CFS. In the past we heard that some patient lobbyists had encountered obvious "glazed-eye" boredom or even mild hostility. Not this year!

We left feeling very hopeful and exhilarated to have been part of the process. Meeting others from around the country was part of what made this so meaningful. And we saw Dan Rather coming out of an office as we were going in! 

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EXPENSES

Thanks to airline passes, we only had about $400 in expenses. We were committed to doing this, and expected to cover the cost on our own despite the difficulties of living on disability income. 

However, members of the Austin CFS Support Group wanted to participate by helping out, as did several of our members. We have $195 in contributions to date. If anyone else wants to contribute, checks can be made out to the CFS/FM Support Group of DFW, designated "DC Trip", and mailed to 513 Janann St, Euless TX 76039. Any monies that exceed our expenses will be set aside in a fund for future DC trips, unless otherwise noted. Since we have our 501(c)3, contributions are tax deductible. 

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THANKS

Special thanks to Kristin in Bedford who flew with us to Washington D.C. to push a wheelchair, and to Marie in Virginia who took a day off work to push a wheelchair. Y'all made the day possible for us!
 

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