CFS Education Course Debuts

By Richard Wansley, Ph.D.,
Illinois Health Education
Consortium/Illinois AHEC

Educational programs for health care providers to learn about chronic fatigue syndrome (CFS) are practically nonexistent, and according to a medical school curriculum survey by the Health Resources and Services Administration (HRSA), information on CFS is not included in most medical teaching programs.¹

In addition, continuing education courses that address this complex disorder, which affects 800,000 American adults and youth, are just as rare. And medical journal articles about recent research findings on CFS often do not reach those who care for patients.

The educational void has left practitioners unaware of the prevalence and presentation of CFS, resulting in as much as 90% of CFS patients going undiagnosed and possibly receiving inappropriate treatment.²

To narrow the gap in provider knowledge, The CFIDS Association of America and the Illinois Area Health Education Centers (AHEC) Program have partnered with federal and private agencies to launch a new program to increase understanding of CFS among medical professionals.*

The primary care provider education program is targeted at physicians, physician assistants, and nurse practitioners, but will eventually broaden to include medical specialties and allied health providers.

Curriculum content
A group of nationally recognized CFS experts developed the CFS provider education curriculum, which instructs participants in taking patient histories, exclusionary testing, practical approaches to symptomatic treatment, making a differential diagnosis, and developing treatment plans to help patients regain as much function as possible. Students are then challenged with case studies.

Over the next year, the curriculum will be made available via Web-based self-study, live presentations, and a video, and will allow providers to earn continuing education credits when they complete the course.

The curriculum includes supplementary resources and tools, such as a decision tree to assist in diagnosis (see box below); case studies; a FAQ (frequently asked questions) sheet to answer patients’ top concerns; an overview of issues involved in disability evaluations; and a selected annotated bibliography.

Provider training
A key component to kicking off the provider education program is recruiting and training course instructors.

The first two-day train-the-trainer workshop to instruct a core group of physicians, physician assistants, and nurse practitioners in how to detect, diagnose, and manage CFS was held April 7-8, 2001, in Charlotte, N.C. and attracted 20 providers.

CFS expert clinician Dr. Charles Lapp of the Hunter-Hopkins Clinic in Charlotte, N.C. led the medical portions of the two-day curriculum. Psychologist Dr. Leonard Jason of DePaul University discussed the epidemiological and psychosocial aspects of the illness. And public speaking expert Barbara Busey of Presentation Dynamics in Charlotte, N.C. prepped participants to return to their communities to deliver skillful presentations about CFS to colleagues.

Dr. Lapp said when asked about the program, "As an internist who cares for more than 2,000 CFS patients, I know how desperately medical education is needed. My patients often travel hundreds, even thousands, of miles for their annual exam and medication review. They find it difficult to convince local physicians of the severity of their illness.

"And as a doctor, I want to see my profession do better by these seriously ill people. There are treatments available to ease their suffering and contribute to better function and a better quality of life."

Dr. Jason sees the program as an opportunity to expose providers to the trauma that CFS patients experience when they cannot receive a diagnosis or are not believed to be ill. Jason said, "Validating the patient's suffering and presenting an approach to manage this condition can be very therapeutic in itself. Establishing that kind of relationship can be challenging, but ultimately it can be rewarding, too."

Dr. Debra McCormack of Bonita Springs, Fla., who also participated in the first workshop, recalled her first impression of CFS during medical school in the early 90s. "I remember hearing about Dr. Lapp and his CFS patients. The faculty called him a quack. Now I see these patients in my practice and I know they are ill. I just want to help spread the word."

Brenda McKenzie, an advanced practice nurse in Lawton, Okla., echoed Dr. McCormack's sentiment. "I see two to three patients a week in my family practice who could possibly have CFS. Getting care for these patients is a real problem in our area."

The April 7-8 training class was the first of several train-the-trainer workshops planned for 2001.

In exchange for payment of travel expenses and a modest stipend, participants of the train-the-trainer portion of the program agree to teach at least 40 other primary care providers about CFS before Oct. 1, 2001.

For information about how to become a peer trainer or the dates and locations of the next sessions, contact Terri Lupton, R.N., The CFIDS Association’s Coordinator for Educational Opportunities, at tlupton@cfids.org or call 704-365-2343.

Program promotion
To increase awareness about CFS and extend the reach of the provider education program, information on CFS and the medical curriculum was showcased this March at the American Society of Internal Medicine and American College of Physicians joint annual meeting in Atlanta.

In addition, plans are underway to generate interest and attract participation in the provider education program at the American Academy of Physician Assistants annual conference in Anaheim, Calif. this May and to the American Academy of Nurse Practitioners national meeting in Orlando in June.

Information on CFS and the educational program will also be on display at the American Psychological Association, American Academy of Pediatrics, and American Academy of Family Physicians meetings later this year.

Lupton, who talked with scores of providers visiting the three-day exhibition in March, said the overriding sentiment expressed by attendees was frustration in managing the disorder.

"Practitioners were hungry for practical information on CFS that they could use to make a more confident diagnosis and to develop more effective treatment plans," she said.

"Several voiced distress about managing the multitude of symptoms. Just as they get one symptom under control another emerges."

A few providers also confided to her that treating CFS patients can be an isolating experience. "With so few clinicians caring for these patients, it’s often difficult to make referrals to experienced specialists when warranted. They’re desperate for help, in ways that are similar to the CFS patients who need to be cared for."

References

1. Proceedings of the Working Group on Medical School Curricula and Women’s Health, 1996. Health Resources, and Services Administration, Office of Women’s Health and National Institutes of Health, Office of Research on Women’s Health.
   
2. Jason et al. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999; 159: 2129-37.Dr. Wansley is Executive Director of the Illinois Health Education Consortium and Illinois Area Health Education Centers (AHEC) Program, one of the organizations directing the CFS provider education project.

* Editor’s Note: Funding is currently being sought to expand education efforts directed to health care providers so that the positive impact of the programs will translate into better care for CFS patients. Visit The CFIDS Association of America’s Web site at  www.cfids.org for up-to-date information on professional education opportunities.