Ask the CEO

K. Kimberly McCleary , President & C.E.O. of the CFIDS Association, responds to readers’ questions.

Q: Kim, some of what I read online suggests that the CFIDS Association has lost touch with the needs and wishes of people with CFIDS. I don’t necessarily agree, but reading these things makes me wonder.

A: Every member of the Association’s Board and staff is intensely aware of the challenges that people with CFIDS face, either through personal experience (their own illness or that of a loved one) and/or frequent contact with CFIDS patients, caregivers and professionals who care for CFIDS patients. Since the Association was founded in 1987, 68 individuals have provided direction for the organization through service on the Board of Directors. Collectively, these volunteers reflect the diversity that exists within the community. While there have been many goals shared by the majority of these directors, divergent opinions and differences among them have also shaped the Association. It’s convenient to suggest that there is a singular “patient perspective” that the Association should represent, but in reality, views and priorities are as individual as the people who hold them. It’s the challenging job of the Board to meld these views into cogent policies and pursuits that serve the community as a whole.

Another process in the evolution of the Association has been the formation of partnerships with other organizations and federal agencies to accomplish long-term strategies widely endorsed within the CFIDS community, such as expanding research and educating physicians. Some see this as “selling out,” but the goal of shifting the burden for funding promising CFIDS research and education from the patient community to other institutions was established for our advocacy program more than a decade ago.

In Emerging Illnesses and Society, author Steven Epstein observes that within the AIDS movement, “it was not possible for the key treatment activists to become authorities on clinical trials and sit on the [NIH] committees without, in some sense, growing closer to the worldview of the researchers – and without moving a bit away from the their fellow activists engaged in other pursuits.” This seems to be a natural dynamic as movements and organizations grow and change. Still, the CFIDS Association’s Board of Directors is watchful in this regard and is in the process of evaluating present programs and long-term direction.

Q: One of the greatest needs CFIDS patients have is help finding a knowledgeable health care provider. Why doesn’t the CFIDS Association make physician referrals?

A: Years ago we maintained the Physician Honor Roll, a national referral list created through recommendations received from individuals. Our policy was to add a provider based on a single recommendation, but to assess requests to remove a doctor on a case-by-case basis (unless the request was made by the doctor). Even before the Internet became a popular venue for exchanging information, some providers were the subject of ongoing campaigns to keep retain them, or get them removed from, the list. We were drawn into disputes over office policies, fees, reimbursement issues and treatment rendered (or not rendered), despite standard disclaimers. When we became aware of case law that created a very real and potentially sizable liability for the Association because of patients’ experiences with providers named on our list, we reached the very difficult decision that we must discontinue the Honor Roll.

We’ve explored the possibility of initiating a new referral network many times since then. The same problems still exist and new ones stem from the increased complexity of the health care marketplace. Talking with health care providers about the issue, we’re often told that while they might feel capable of managing their existing patients with CFIDS, they don’t feel qualified to be identified as a local “expert” and can’t accept more than a few CFIDS patients due to the time required for their care (and the time limitations imposed by managed care). Nationally recognized CFIDS experts frequently have long waiting lists and most want to work with a patient’s local primary care doctor for routine care and medication monitoring.

If traveling to one of these experts is an option, consider starting with present and past Board members of the American Association for CFS (AACFS), the organization of clinicians and researchers dedicated to CFS. You can find their names and contact information on our website at http://www.cfids.org/about/aacfs-doctors.pdf. Many local and state support groups keep lists of local providers, too. Request a support group listing for your state by sending a message to nbouknight@cfids.org.

Q: Ms. McCleary, I’ve noticed that the look of the Chronicle has changed. It’s more like a magazine. It looks great, but I’m concerned about the Association spending more funds on printing when research should be our priority. Does this new look cost the Association more money?

A: The Chronicle was redesigned in 2004. Desktop publishing and digital printing technologies have revolutionized the printing process in the last decade, enabling companies and organizations to design publications in-house using desktop publishing software, create digital images of each page and then upload the publication directly to the printer’s website. This allows companies to work with  printers anywhere in the world and match a printer’s capabilities and pricing to an organization’s needs. The new technologies also mean that much more sophisticated designs with color and graphics can be done for the same cost as printing a publication with no photos or graphics.

All of these advances have been a boon to nonprofit organizations like the CFIDS Association that count every penny and rigorously oversee the use of funds. Studies show that the use of graphics, colors and good design techniques not only make a publication more visually appealing but enhance readability and recall of information presented.

We are very aware of the multiple chemical sensitivities and cognitive dysfunction some of our members suffer from, and in making changes to our publications, we want to make sure we are serving our PWC audience well. For instance, in the spring 2005 CFIDS Chronicle we experimented with full color and asked readers for their comments about how this change impacted their reading experience.

If you have comments about the Chronicle, contact Pam Young, Director of Publications, at pjyoung@cfids.org. If you would like to begin receiving the quarterly Chronicle (and sister publication, the CFS Research Review), visit http://www.cfids.org/ecommerce/membership.asp  to start your subscriptions and begin enjoying all the benefits that Association membership brings.