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Winter 2002

Joint CFIDS Education Project Targets Health Care Practitioners
By Terri Lupton, RN

"Where can I find a doctor who understands CFIDS?” It’s one of the most frequent questions The CFIDS Association of America hears from patients. While health care professionals play an important role in the fight against the illness, lack of knowledge is an ongoing problem.

More than 70 percent of the health care practitioners who responded to the Association’s recent survey said that the amount of professional education for medical personnel about CFIDS is not adequate. In fact, more than 30 percent named lack of knowledge about CFIDS in the medical community as the greatest barrier to diagnosis and treatment.

To address this problem, The CFIDS Association of America has partnered with the U.S. Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA) and the Illinois Area Health Education Centers (AHEC) Program to launch a primary care provider education project.

The project, which officially got underway in October 2000, is increasing understanding of CFIDS among medical professionals and providing opportunities to challenge the historical myths about CFIDS by offering current facts based on research outcomes.

CFIDS curriculum
The cornerstone of the provider education project is a CFIDS curriculum, a comprehensive set of learning materials about diagnosis and management of the illness. In essence, it is a “CFIDS 101” course developed by a group of nationally recognized experts.

The curriculum provides practitioners with evidence that CFIDS is a serious, complex and disabling illness, and introduces them to the substantial body of literature documenting objective evidence of an underlying biological disorder.

Participants learn how to interpret patient medical histories, implement a decision-making model to help diagnosis, use laboratory tests to distinguish CFIDS from other illnesses, form a practical treatment plan to address symptoms and assist patients with applications for disability benefits. The curriculum provides several case studies of typical patient stories that medical professionals can use to practice what they have learned.

Training sessions
The education project is reaching health care professionals through a nationwide training program that equips practitioners to teach their colleagues about CFIDS. In 2001, 55 medical professionals from all over the U.S. attended a two-day intensive workshop where they learned how to present the CFIDS curriculum. These “core trainers” will now present one-to-two hour instructional sessions for medical professionals in their local areas. Each trainer will educate a minimum of 40 other medical professionals. The goal is to educate 2,200 health care providers before fall 2002.

Medical professionals have an incentive to attend these training sessions beyond their interest in CFIDS. In order to maintain their medical licenses, most medical professionals must obtain continuing medical education (CME) credits every year, and attending one of the education project presentations on CFIDS can help fulfill that requirement.

Trainers are also receiving support in locating regional groups who might be interested in presentations — for example, they have received lists of local AHEC programs offices or universities. State and local AHEC programs have been particularly beneficial in terms of CFIDS awareness efforts because one of their major functions is the education of health care professionals.

In addition, the CFIDS Association is exhibiting at medical meetings as part of the education project. Exhibiting involves setting up an educational booth where Association representatives can hand out information and talk about CFIDS with health care practitioners in attendance. In 2001 alone, the Association exhibited at six national medical meetings.

Other learning formats
A future part of the education program will be Web-based learning. Many medical practitioners are now seeking to gain their CME CE via the Internet, so the Association is partnering with consultants who are experts in this area to develop a self-study program for the Association’s Web site, www.cfids.org.

An educational video is being produced to educate providers who are unable to attend local training sessions or do not have Internet access. It consists of three parts: a presentation on CFIDS, review of two patient case studies (the patients remain anonymous) and interviews with actual CFIDS patients. CE credits were approved for a print-based self-study version of the curriculum in January 2002.

Benefit for Patients
Patients should know that the primary care provider education project is making sure that practitioners in medical schools, medical societies, clinics, hospitals, public health agencies and universities have increased opportunities to learn about CFIDS.

More than 900 medical health care professionals and students in eight states have already attended presentations on the illness. When possible, dates and locations of future training sessions will be posted on www.cfids.org so that patients can notify their own providers of local learning opportunities.

A formal evaluation process for the project will be implemented this year. Several ideas for furthering the project’s reach have already been generated, including offering learning opportunities to a wider group of providers (such as physical therapists and social workers) and concentrating efforts to bring the curriculum to medical schools. We hope that this important project will continue to act as a stepping-stone for more outreach and education of medical practitioners in the future.

Terri Lupton, RN, the CFIDS Association’s Coordinator for Educational Opportunities, manages the multiple segments of the Primary Care Provider Education Project.

“Nurse practitioners, physician assistants and other health providers are increasingly caring for patients on behalf of physicians, so the project is aimed at them as well,” says Terri Lupton, RN, The CFIDS Association of America’s Coordinator for Educational Opportunities. “Future audiences that may be reached could include mental health professionals and occupational and physical therapists.”

Ken Korber, a physician assistant (PA) in Chicago, core trainer and member of the project’s Advisory Committee, has presented the CFIDS curriculum to a group of 250 family practice PAs at their 2001 national meeting. He is also using some of the curriculum material to write a new chapter on CFIDS to be included in the second edition of The Physician Assistant Medical Handbook, to be published in 2002.

“The provider education project’s training program was very helpful in getting me ready to teach my colleagues about CFIDS, ” Ken says. “The curriculum is a versatile tool, especially useful with small groups where you can have a lot of one-on-one interaction with practitioners and the ability to emphasize the need for multidisciplinary care.”