Dr. Bell and other members of the committee, thank you for the opportunity to address the committee today, possibly the last meeting of the CFS Advisory Committee as it is currently constituted. I appreciate the fact that today, as the nation’s and federal government’s resources are directed at the relief and recovery effort for those affected by Hurricane Katrina, this meeting was permitted to take place. There are likely hundreds or thousands of people with CFS in the affected Gulf coast region. While this storm has been referred to as the great equalizer, surely the people who bear the burden of poorly understood, disabling chronic conditions exacerbated by physical and emotional stress – conditions like CFIDS – face added challenges. I hope these individuals will occupy a special place in our thoughts as we spend today considering priorities and planning action steps.

About two weeks ago, before Katrina made landfall, I read a letter written to me by a woman with CFIDS. Unfortunately, her story was not all that rare. Over the 14½ years I’ve been with the Association, I’ve heard many grim tales, as I’m sure most of you have. I think it was the writer’s plain language and her simple request that struck me and stuck with me. I would like to share her letter with you, although she has not expressly asked me to.  This committee and today’s meeting are probably far outside her daily concerns and struggles, but I believe her words can help us focus on how this committee and the agencies represented here can make a difference in her life. I’ll call the writer “Delia” to protect her privacy.

Here is her letter http://www.cfids.org/advocacy/2005/delia.pdf  (please be patient the document is slow to load).

Delia’s letter offers a real-world perspective on what CFS is and how it impacts those who have it. First, her circumstances reflect the devastating cumulative effect of an otherwise unremarkable list of defining symptoms, and the lack of recognition that most people have of the disabling nature of the condition. Her plight reminds us of the dire consequences this illness creates when the individual can no longer continue her role in the working world, can no longer financially support herself, and has no family or other safety net to rely on for even the most basic forms of support. All of these conditions point to the still crucial need for broad-based awareness and public education about CFS and its impact – on the individual, the family, the community, the economy.

Delia tells us she applied twice for SSDI and was twice declined. Without more information it’s hard to know why. She did include with her letter one from her physician who lists her symptoms and notes that, “She currently has severe limitations that impair her from being employable. The above conditions are chronic and should be considered permanent. She is permanently disabled.” The process for obtaining Social Security benefits is built on the expectation that some candidates will simply wear out or give up. Even for the successful candidates, the persistent ones, savings and/or the goodwill of others may have long ago run dry by the time they receive their first check. Delia’s case is a reminder that even with a Social Security policy ruling for CFS, not all deserving applicants will be awarded benefits, and without SSDI, applicants can’t get access to Medicaid or SSI benefits. And without access to routine medical care, it’s tough to establish disability: a serious Catch-22.

The letter from Delia’s physician was the most hopeful thing I found in the envelope. His letter reflected a level of concern for her health and well-being and a recognition of the effects of CFS and FM. His practice setting? A community health center, one of hundreds around the country funded by the Health Resources and Services Administration. Still, I wonder how many of the providers working in these overextended clinics would be prepared to diagnose CFS and help manage Delia’s health care needs, including supporting her disability application. Although the medical community appears to be less opposed to the idea of CFS, we still have a long way to go toward building a national network of clinicians capable of providing good care to people like Delia.

For Delia, the pressing problem of homelessness is one for which there aren’t easy answers or ready federal programs housed in the Department of Health and Human Services. Yet, in the wake of Hurricane Katrina perhaps the nation is ready to grapple with it. Maybe we can design and provide programs that offer better solutions than were available to people like Delia prior to Aug. 30.

And finally, what would do Delia more good than donations toward a van or help winning Social Security benefits? Improvements to her health derived from expanded research into the pathophysiology of CFS and improved treatments that not only alleviate symptoms, but improve function and restore predictable quality of life. Hopefully the $4 million Request for Applications issued by the National Institutes of Health will attract new researchers to the field and result in funding for promising hypotheses. Thank you to Dr. Hanna and Dr. Vivian Pinn for cultivating support from six institutes and offices led by the Office of Research on Women’s Health to provide funding for this alert sent to the research community. And thanks to the CDC and Dr. Reeves for supporting of a diverse set of studies that has demonstrated the functional and economic impacts of CFS, its magnitude in terms of prevalence and severity and for conducting research that promises to identify a biomarker for CFS through the use of proteomic and genomic technologies. I am concerned about NIH reform measures being proposed by Congress in the process of reauthorizing NIH and hope the committee will look at the impact these changes might have on multi-systemic illnesses that don’t fit neatly into the body system institutes that organize the vast NIH. I’m concerned about the effect the conclusion of “payback” funding will have on the momentum established in the CDC’s CFS research program. Without sustained resources to continue the work on clinical studies and molecular epidemiology, we stand to lose ground in the search for a biomarker.

My intent in sharing Delia’s story with you was not to bring you down or contribute to feelings of disappointment or frustration that may already exist (remember, I once sat on the other side of these tables). Although I’ve regularly come to these meetings and have used my time to highlight problems rather than to celebrate successes, I fully recognize that the people in this room – including the federal agency officials – are the ones interested in improving the circumstances for Delia and a million others like her. And I am genuinely and deeply appreciative. Yet, we have to mobilize more resources. We have to think more creatively. And we have to find ways to expand what we’re doing now to improve the likelihood that we’ll create meaningful successes in research, clinical care and education.  

To Dr. Bell and the other committee members for whom this is your last meeting, thank you for your service to the community in this important capacity. Thank you to the others on the committee who will welcome new members and work with them to extend the guidance this committee provides to the department. All of you serve a vital role as validators of suffering, agents of accountability, and translators of need into the language of policy and priority. Your work and your recommendations elevate the simple request of an individual advocate to a call to action that we can all use to focus the attention of lawmakers and public health officials. You link the voice of someone like Delia to the ears – and hearts and minds – of people with the power to act on her behalf. Researcher Joseph Dumit of MIT writes about your role in his article titled, “Illness you have to fight to get: Facts as forces in uncertain, emergent illnesses,” published in Social Science and Medicine.

“The existence of a movement around individual suffering makes healthcare system problems more visible, puts them on the public agenda, and opens the space for dialogue about the meaning of suffering from something like CFS. Without these movements, CFS and other ‘invisible illnesses’ would be unintelligible.”

We can all be part of the movement to produce results and reduce suffering.

Again, thank you for holding this meeting today, allowing me the opportunity to address the committee, and continuing to include CFS among a growing multitude of public health priorities pursued by the Department.