Targets Health Care
By Terri Lupton,
"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
More than 70 percent of the health
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.
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
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
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
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
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
Trainers are also receiving support
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
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
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,
An educational video is being produced
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.
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
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.
Training reaches beyond physicians
As the world of medicine
changes, physicians rely increasingly on assistance from other health
professionals. To make sure that all the key health care decision-makers who
come into contact with CFIDS patients are familiar with the illness, the CFIDS
primary care provider education project has targeted more than just physicians.
“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)
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.”