ME/CFS Primer/Education Newsletters NewsLetter Documents 2009 Medical Student Scholarship for CFS

The New Jersey Statewide Chronic Fatigue Syndrome Medical Student Scholarship Program was judged recently and the essays submitted were of a high quality. The winning essay by Madeleine Sterling can be downloaded here as a PDF file. 

Below is an overview by Ken Friedman about the NJ CFS Association and the scholarship programme. This provides a wonderful opportunity for promoting interest and education at the student level. It is an idea that could be encouraged at other universities.


Application for the CCHP 2009 Annual Award


The New Jersey Statewide Chronic Fatigue Syndrome, Medical Student Scholarship Program


Submitted by
The New Jersey Chronic Fatigue Syndrome Association
         

and

The Foundation of the University of Medicine and Dentistry of New Jersey




Who We Are:

•    The New Jersey Chronic Fatigue Syndrome Association (NJCFSA) serves the needs of patients with Chronic Fatigue Syndrome (CFS) within the State of New Jersey.  It was formed in the mid-1990’s and currently has a membership of approximately 400 members.  It is a volunteer, non-profit organization that raises some funds which it expends on CFS education of both the lay public and physicians, and a small amount of research.

•    The Foundation of the University of Medicine and Dentistry (Foundation of UMDNJ) is an independent not for profit organized to advance programs at New Jersey’s health sciences university.  UMDNJ is the largest public academic health science university in the nation.  The Foundation of UMDNJ solicits contributions for targeted programs and endowments throughout the University’s system of schools, health care facilities and affiliated institutes.


The Healthcare Problem We Address:

CFS is an illness or disorder that affects at least 1 million citizens in the United States.  The exact number of CFS patients is unknown and varies with the criteria used for diagnosis.  Recently the Centers for Disease Control and Prevention have altered their criteria for CFS diagnosis and have reported an approximate 4 to 6 million Americans with the illness.

CFS is an illness of extreme variability.  Some patients are bedridden for years.  Others are able to manage the tasks of daily living but are unable to work.  Those with milder symptoms are capable of some work.  Most patients are not able to work full-time.  The drain of this illness on the U.S. economy is an estimated $25 billion/year.

CFS, as characterized by the most popular (Fukuda) case definition, has been in existence since 1994.  Prior to that time, patients with the symptoms of CFS received different diagnoses.  Were we to say that CFS as an illness was first recognized in 1994, the progress toward understanding the etiology of CFS and developing effective therapeutics has been disappointing.  Despite 15 years of funding for CFS projects by both the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), the cause of CFS remains unknown and there is not one FDA-approved therapeutic agent available for the treatment of CFS.

In the mid 1990’s the New Jersey Chronic Fatigue Syndrome Association, Inc. was formed to step into the breach for the patients living in New Jersey by at least providing information about the illness to patients who were either diagnosed as having CFS or suspected that they had the illness.  The services offered by the organization are listed on its website:  www.njcfsa.org.  The organization realized that one of the major roadblocks to CFS patient care was the lack of physician knowledge about the illness and the lack of treatment guidelines for CFS.  

To provide physician education, the NJCFSA began holding physician/patient conferences with physician continuing medical education credit (CME’s).  Those conferences are still ongoing and held either once or twice each year.  To further fill the need for physician education, the organization lobbied the New Jersey State Legislature for funding of a physicians’ manual describing the procedures for diagnosing and treating CFS.  The organization’s lobbying effort resulted in the production of “A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome” which was distributed to every licensed physician within the State of New Jersey in 2002/3.  The manual may be viewed and downloaded from the NJCFSA website (www.njcfsa.org).  The need for such a diagnosis and treatment manual is underscored by the desire of patient groups in other countries to translate the manual in their native languages.  Thus far, the Consensus Manual has been translated into Japanese (for use in Japan) and into Spanish (for use in Spain and distribution to Hispanic communities in the United States and South America).

Still, the need for physicians capable of diagnosing and treating CFS persists as evidenced by the requests for help received by NJCFSA.

There is a need for medical students to learn about CFS.  If CFS were covered as part of the medical school curriculum, then all physicians would have some knowledge of the diagnosis and treatment of CFS.  Knowledge of CFS would create willingness to accept this disorders a valid illness and to treat patients afflicted with it or refer afflicted patients to colleagues experienced with treating it.  

Unfortunately, medical schools do not include CFS in their curricula.  Asked why CFS is not included in the medical school curriculum, schools reply that CFS is an illness too ill defined to warrant inclusion in the curriculum.  Moreover, were CFS included in the curriculum, other, similar illnesses (neuroendocrine immune disorders) would also need to be discussed.  The discussion of this group of ill-defined illnesses would overwhelm the curriculum.  

This matter was brought to the attention of the Chronic Fatigue Syndrome Advisory Committee(CFSAC) in 2003/4.  The CFSAC is one of 11 federal advisory committees housed in the office of the United States Secretary of Health and Human Services and serves to advise the Secretary of Health on matters related to CFS.  The CFSAC wrote letters to both the American Medical Association and the American Association of Medical Colleges using the power of the Committee to ask how CFS is, or could be covered in the medical school curricula in the United States.  Neither organization responded.

Our Solution to the Healthcare Problem:

Therefore, the NJCFSA decided that if CFS could not be covered in the medical school curriculum, a program needed to be devised that would supplement medical education with medical information concerning CFS.  The program would need to be non-competitive with the medical school curriculum and not interfere with the study time of medical student.  Otherwise, the program would not be permitted to be an adjuvant to the  medical school curriculum.  Hence, the concept of a summer, competitive scholarship program was created.  The program asks medical students between their first and second years of medical school to write an essay on an assigned CFS-related topic.  The summer between the first and second years of medical school was chosen as it is the only summer that students in medical school are not involved in coursework.  Students between their first and second years of medical school have an opportunity to learn about CFS while not involved in any other aspect of medical education.  Rising 2nd year students submit their essays to the NJCFSA in September of their 2nd year of medical school.  A pre-established, judging committee reads the submitted essays and selects one essay as being the best submitted essay.  The author of that best, submitted essay becomes the NJCFSA Medical Student Scholar and wins the scholarship contest.  Currently the CFS Medical Student Scholar  receives a $3,000 tuition remission for the 2nd year of his/her medical education.

In order for this program to work statewide, and permit every medical student in the State of New Jersey an opportunity to compete and potentially win this scholarship, there needs to be a centralized, coordinating mechanism to control yearly program announcements, and the awarding and distribution of funds.  All three of New Jersey’s medical schools are under the umbrella of the University of Medicine and Dentistry of New Jersey.  Therefore, there exists one central administration for all three medical schools.  By partnering with the Foundation of UMDNJ, a foundation that raises funds on behalf of the University, and administers many scholarship programs at the component schools of UMDNJ, NJCFSA is able to realize its dream of providing every medical student in the State of New Jersey an opportunity to learn about CFS.  The agreement reached between NJCFSA and the Foundation of UMDNJ, is that the Foundation will run the scholarship program through all three of New Jersey’s medical schools during the period in which NJCFSA raises the $60,000 needed to endow its scholarship program.  While the endowment is being raised, NJCFSA directly pays the $3,000 scholarship to the Foundation who, in turn, sends it to the appropriate bursar’s office to be credited to the tuition account of the scholarship winner.  Once NJCFSA raises the $60,000 endowment, the scholarship will be self-sustaining without further financial input from NJCFSA.


Impact of Our Partnership:
To our knowledge, the NJCFSA/Foundation of UMDNJ partnership which awards the NJCFSA Medical Student Scholarship is the first such agreement and award of its kind in the United States and possibly the world.  We know of no other patient advocate group so desperately in need of proper medical attention that they have offered a supplemental medical student scholarship to entice medical students to learn about their illness.  The NJCFSA/Foundation of UMDNJ program is now in its third year.  Each year, the recipient of the scholarship attends the NJCFSA Fall Physician/Patient Conference and accepts his/her award.  Each year in their acceptance speeches, the recipients of the award describe the effect of having gone through the process, of having learned about CFS, and the effect of that process on their peers who opted not to participate in the program.  The discussions held between program applicants and other medical students further the knowledge about CFS amongst our future physicians.

The NJCFSA/Foundation of UMDNJ CFS Scholarship Program has drawn national attention.  The CFSAC requested a presentation describing the program at its October, 2007 semi-annual meeting.  The program was received enthusiastically.  A member of the Advisory Committee offered to donate to the program.  The Wisconsin CFIDS Association declared that it would start a similar program in Wisconsin.  P.A.N.D.O.R.A., a Neuroendocrine Immune Disorders organization, agreed to fund similar scholarships in Florida and Vermont.  The Director of the Vermont Department of Health, learning of the establishment of a scholarship program in his state, has publicly endorsed the program.

Impact of the CCPH Award

Were NJCFSA and the Foundation of UMDNJ to receive the CCHP Award in recognition of its partnership and statewide medical student CFS scholarship program, national consequences would result:  (1) The legitimacy of using a supplemental, educational program to increase the knowledge of physicians in training would be established.  (2) The use of the summer between the first and second years of medical school as an appropriate time in which supplemental education could be provided to medical students would be accepted.  (3) Patient advocate groups would come to realize that they have the ability to influence the education of physicians in training by creating supplemental, summertime scholarship programs.  Such programs have the potential to increase the efficacy of the medical care that these patients receive.  (5) National recognition of this program will perhaps promote similar partnerships between patient advocate groups and Foundations that support the missions of other healthcare schools and/or universities.  

Submitted by:

Kenneth J. Friedman, Ph.D.
Associate Professor
Department of Pharmacology and Physiology
New Jersey Medical School
Newark, NJ 07103

And

Elizabeth Ketterlinus,
Vice President for Development
Foundation of UMDNJ
65 Bergen Street  Suite 1551
Newark, NJ  07107

 


Back to IACFS/ME Newsletter, December 2009