The Research/Advocacy Connection

By Vicki Walker

Facilitating CFS research is at the core of the CFIDS Association's public policy program. Its goal is shifting the burden of funding CFS research from those who can least afford it, the patients, to those who can best afford it, the U.S. government.

The U.S. federal government is one of the world's largest funders of biomedical research, with the National Institutes of Health at the top. The $28 billion budget of the NIH represents 1 percent of the entire federal budget and about 28 percent of all medical research funded in the U.S. In comparison, all private U.S. nonprofit organizations, combined, only represent about 3 percent of health research funding according to the RAND corporation, a nonprofit research organization.

Clearly, having federal funding is essential to accelerating CFS research.

In 1992 when the CFIDS Association took responsibility for leading national CFS advocacy, the relationship they inherited between federal scientists and CFS advocates was frosty, at best. Earlier advocates, taking a cue from AIDS activists, were strident in their justified anger over the government's disregard (and even animosity) toward CFS and the patients who suffered from it. The unfortunate side effect of this well-intentioned strategy was a breakdown of communication between federal health agency staff and activists, greatly reducing the ability to learn from one another. Better ways to maintain pressure and communication needed to be established.

The CFIDS Association's advocacy strategy has been one of firm, unwavering pressure on Congress and the federal health agencies not only to increase CFS funding, but also to steer funding toward research projects that contribute toward understanding the biological underpinnings of the illness.

In 1998 the Association’s watchful eye on federal CFS research spending found that the Centers for Disease Control and Prevention (CDC) had taken $12.9 million out of its CFS research budget, spent it on other programs and lied to Congress about it. Congressional advocacy led by the CFIDS Association eventually got all of this money restored to the CDC's CFS program. Oversight also showed that the NIH's already slim CFS budget had been overstated by $5.8 million from 1999 to 2003 by including funds spent on overlapping conditions. In 2005, a $4 million call for CFS research proposals yielded seven new studies on neuroimmune mechanisms in late 2006. These are just two examples of advocacy literally paying off for the CFS community.

Patient and advocate involvement is a core element in making advocacy work. The Association doesn’t have a full-time lobbyist in Washington, D.C, so we depend on widespread participation from advocates across the country to inform Congress and agency representatives about the illness and demonstrate the public's support for CFS research. Because most CFS advocates are too sick or may lack the financial resources to travel to Capitol Hill, in 2004 the Association implemented the online Grassroots Action Center (GAC), which makes it extremely simple for patients with Internet access to share their policy requests about CFS electronically with federal decision makers.

The Association also maintains regular communication with federal authorities on behalf of the CFS community, forging relationships and broadening federal participation in CFS research. The Association participates in the Department of Health and Human Services' CFS Advisory Committee, on CDC peer review and scientific advisory bodies, in informal collaborations with NIH staff and through congressional briefings, including one planned for May 8, 2008. (See story)

Through a combination of patient activism, congressional lobbying, relationship building and steady pressure, it’s the CFIDS Association’s strategy to push for more government funding for CFS research, hold federal agencies more accountable and help prioritize federal CFS research toward biology-based investigations, such as genetic and immunologic studies, rather than psychological theories.

That’s what makes the research/advocacy connection so strong and why the Association’s public policy program is an integral part of our work.
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Articles detailing the Association’s research strategy and decisions as the field has evolved--and where we’re heading next--will appear in the spring CFIDS Chronicle. Join the CFIDS Association before May 15 to start your CFIDS Chronicle subscription with this issue.

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Research matters. Through donations from individuals like you, the CFIDS Association of America has become the largest source of CFS research money aside from the federal government.

If accelerating the pace of CFS research matters to you, please donate now.