RETURN TO TABLE
CFS Education Course
By Richard Wansley,
Illinois Health Education
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
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.
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 patientsí top concerns; an overview of issues involved in disability evaluations; and
a selected annotated bibliography.
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
in how to detect, diagnose, and manage CFS was held April 7-8, 2001, in Charlotte, N.C. and attracted
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 Associationís Coordinator for Educational
Opportunities, at email@example.com or call 704-365-2343.
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
"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
"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, itís often difficult to
make referrals to experienced specialists when warranted. Theyíre desperate for help, in ways that are
similar to the CFS patients who need to be cared for."
- Proceedings of the Working Group on Medical School Curricula and
Womenís Health, 1996. Health Resources, and Services Administration, Office of Womenís Health and National
Institutes of Health, Office of Research on Womenís Health.
- 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
Health Education Centers (AHEC) Program, one of the organizations directing the CFS provider education
* Editorís 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 Americaís Web site at www.cfids.org
for up-to-date information on professional education opportunities.