Born to Run: NJCFSA Rocks New Jersey

May 20, 2010

Posted by Cort Johnson

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2545-NJCFSALogo..jpgMost states don’t have a statewide CFS organization let alone one that puts on conferences, writes comprehensive CFS manuals, provides high school and college scholarships, advises school on pediatric issues and more. In short, the ME/CFS patients in New Jersey have somehow managed to create a viable, proactive organization that has been able to influence state practices. How have they been able to do it when so many others have failed?
It’s no surprise that when PANDORA went looking for a place with the political support to build a Neuroendocrine Immune Center they ended up in New Jersey. As that and other efforts proceed this is a good time to take a look at the most successful ME/CFS state organization in the U.S. (this interview was done in 2008 and updated in 2010)

The New Jersey CFS Association Interview

Quote:
Preamble: Chronic Fatigue Syndrome was commonly called CFS at the time that we were sent this questionnaire, and the questions reflect the use of this acronym. Currently, the acronym, ME/CFS is increasingly being used for this disease. NJCFSA is in favor of and supports this development. ME/CFS reflects the fact that the disease we call Chronic Fatigue Syndrome in the U.S. , is also known globally as Myalgic Encephalomyelitis. In our replies, we have, where possible, used the acronym ME/CFS. “CFS” has been retained only where it was necessary to answer historical questions. where it was necessary to answer historical questions.estions.

When did the NJCFSA get started? What were the circumstances of its creation? Why was it created?

The New Jersey CFS Association incorporated and received 501 (3) (c) status in 1995. NJCFSA Inc. combined the individual support groups started in various counties from 1988 onward into a statewide organization.

What did the NJCFSA look like during it first few years? Where was it located? What physical resources did the organization have?

The loosely organized support groups mentioned above combined their resources into one organization to develop and expand programs that would serve to carry out the corporate charter: to disseminate accurate information about CFS, to encourage and support CFS patients and their caregivers and to promote awareness of and research into the cause, treatment and cure of CFS.

What does the NFCFSA look like now? Do you have an office, computers, etc.?

We do not currently have an office. We have the tenacity of volunteers, many of whom are CFS patients, who despite their compromised function use many of their precious “good days” for the good of the organization.

Supporting CFS : the Activities of the NJCFSA

Has the focus of the NJCFSA changed over time? If so, how?

No, our focus has not changed over time; we still put the needs of CFS patients first. Our tactics have changed, but we are still a patient support organization, first, last and always.

CFS patients can call the NJCFSA and get a list of CFS physicians in New Jersey . Are there many? Has the number of CFS knowledgeable CFS physicians gone up or down since the Association was created? How well do you think the CFS patients are served by the medical community in New Jersey ?

We need many more knowledgeable physicians to serve patients with ME/CFS and FM in New Jersey . NJ has a population of about 8.7 million people. Using Jason’s prevalence figures of 0.422%, Dr. Rosemary Underhill calculated that New Jersey has a population of at least 36,000 patients with ME/CFS, of which 85% (over 30,000 patients) are probably undiagnosed. There are many more with Fibromyalgia. To serve this population:

On our recommended physicians, psychologists and nurse practitioners list, (as of 2008) we have the following numbers by state:

  • New Jersey 70 healthcare providers including 59 physicians (MDs and DOs)
  • New York State 11 physicians
  • Pennsylvania 8 physicians
  • Other states 8 physicians

Hopefully, there are other physicians who are knowledgeable about ME/CFS and will diagnose and treat patients, but we don’t know about them. The first physician referral list, published in 1996, included 32 physicians, 6 psychologists, and 2 chiropractors. That number of ME/CFS knowledgeable physicians has gone up significantly.

Were the ME/CFS patient population in the State of New Jersey served adequately, there would be no need for, and no inquiries to, our HelpLine telephone number. Unfortunately, NJCFSA still receives and responds to inquiries on this service on a daily basis. More physicians have been educated about ME/CFS in the State of NJ than have been in most other states. However, due to the financial circumstances in which ME/CFS patients find themselves and the increased amount of time a physician needs to spend with MECFS patients, the result is less than desirable physician care for ME/CFS patients in NJ.

Dr. Bell has written of his concerns about the declining numbers of support groups.
Pat Fero of the Wisconsin CFS Association reported that almost all of the local CFS support groups in Wisconsin are no longer extant. You provide a list of local support groups on your site. How have the local support groups fared over time in New Jersey ?

Some have increased and some have decreased. Attendance fluctuates because of the nature of the illness. There are both small and large support groups affiliated with the NJCFSA. There are several small groups – some are limited to phone support. There are also a few groups that are larger and more active. One group often has 25 people at meetings. Members occasionally travel a considerable distance to attend. Some of the groups also send a monthly e-newsletter that recaps the meeting, announces upcoming agendas, shares state level news, and other helpful information. It is a way to provide support to those unable to attend in person due to health and/or geographical area. NJCFSA-affiliated support group leaders are provided with an NJCFSA Support Group Leader Handbook.

Some things that have helped keep groups going.

  • Leaders try to keep meetings positive and informative.
  • Allot time at each meeting for the introduction of new members and allow both new and current attendees to briefly offer a little info about themselves (name, how long ill, how and why they came to the group).
  • Occasionally have a roundtable of coping skills. Moderators help keep it focused and positive.
  • Printed materials are available at meetings.
  • Guest speakers at meetings address issues such as: gentle exercise, Tai Chi, healing therapies (Reiki, healing touch, etc.), nutrition, disability insurance, current research studies, and more.
  • Conference videos and timely films such as “I Remember Me” are also presented.

There is some communication between some group leaders – especially by sharing their newsletters.

Do you interact with the local support groups? If so, how? Is there a way local support groups can empower a state organization and vice versa?

Several of our local support groups are run by NJCFSA board members. The NJCFSA has a support group leader manual for those wishing to start a support 2544-Infection..jpggroup in the state of New Jersey and we attempt to support our group leaders as much as possible. The support groups that are listed on our website and in our newsletter are chartered through us and they are responsible for carrying out our association’s mission to support patients and their families and to disseminate reliable information about ME/CFS. We have provided support group facilitator training to our leaders and provide them with educational materials through our lending library. Our local support groups encourage ME/CFS patients to support our association by joining NJCFSA and volunteering to help us in any way they are able.

What about other state CFS support groups? Do you communicate with them at all? Is there a reason to? Are there initiatives that a network of state CFS support groups would be effective in addressing? Or is that purely the province of a national organization like the CAA ?

Since many of us are also patients, it might be a matter of energy more than anything else. In the past, there has been some communication between NJ support groups and the ME/CFS association of a neighboring state. It was helpful to have someone who could make suggestions about how they went about getting a toll free phone number and how they ran their conferences, etc. We have also contacted another state organization about one of their fund raising ideas that seemed feasible for our organization. We learned that their fund raiser did not raise enough money to make a profit. That information was invaluable to our organization.

It is advantageous for state ME/CFS organizations to compare notes especially concerning the every day running of an organization. Communication is sporadic. If we have a specific question, we will contact other organizations to see if they have suggestions for a solution. There are pros and cons to an umbrella, country-wide organization: while it would be good to have one united voice to speak at the federal level, there are so many different opinions and so many differing priorities amongst state groups that it is difficult to get the groups to agree. P.A.N.D.O.R.A. and Kenneth J. Friedman are exploring this option. To our knowledge, the CAA does not function in the capacity of polling or organizing statewide support groups.

Your website says the NJCFSA is ‘affiliated with the CFIDS Association of America (CAA) and the American Association for CFS (now the IACFS). Is this a formal affiliation? How do you interact with these two organizations?

NJCFSA is not formally affiliated with either organization. We are completely independent of these groups. We have a professional rapport with both organizations. The CFIDS Association of America is very supportive of our statewide conferences by mailing our conference brochures to their members who live in and near New Jersey . They post our statewide conference announcements on their website. They also generously supply us with handout materials for our conferences and for exhibiting at events. In 2007, the CFIDS Association of America co-sponsored our spring patient conference by providing speakers and bringing “The Faces of CFS” display to New Jersey.

The IACFS/ME has been supportive of our medical school scholarship program by sharing our scholarship information with their membership, thus creating awareness of our organization. They have posted our medical school scholarship application on their website. We in turn distribute information about both organizations to our members at our statewide conferences.

Pat Fero of the WCFSA has talked of the need for support groups not to re-invent the wheel. One would think this would be particularly important in CFS support groups whose members are often disabled – you just don’t want to waste vital energy going down the wrong rabbit hole. Have you seen this happen? Is there a way for CFS support groups can learn from each others experiences?

As patients, we are all aware of the individuality of CFS. While there is a set of symptoms that partially applies to each patient, each patient has a unique set of symptoms. Leaders try to offer information that their members can evaluate for personal appropriateness. The success of a group most likely reflects the satisfaction of its members.

Consensus Manual For CFS

The Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome is an amazing document. Its production was supported by a grant from the state. It had 21 co-authors and advisors many of whom are well known to CFS patients. The New Jersey Department of Health and Senior Services, the Academy of Medicine of New Jersey and the University of Medicine and Dentistry of New Jersey all collaborated in producing it. At a time when CFS advocates can hardly get a hearing in the halls of their prospective capitals, you managed to not only get state funding for this document but the active support of many New Jersey medical organizations. How did this all come about?

The NJCFSA realized the need to educate the physicians within the State of New Jersey about the diagnosis and treatment of CFS. An educational campaign was mounted for state legislators which brought the legislators to the realization that a physicians’ manual for the diagnosis and treatment of CFS was needed to provide adequate care for NJ residents suffering from this illness.

2546-NJCFSA_Consensus___7.jpgNJCFSA made a request for an appropriation from the state legislature to cover the cost of producing a physicians’ manual and distributing it to every licensed physician within the State of New Jersey . The New Jersey State legislature made that appropriation and the funds were given to the New Jersey Department of Health and Senior Services (NJDHSS). NJDHSS then entered into a contractual agreement with the Academy of Medicine of New Jersey (essentially a private organization) to produce the manual.

The Academy of Medicine of New Jersey , with the input and assistance of NJCFSA empanelled a group of “CFS experts” to write the manual. These experts met several times during the course of one year to determine the manual’s content and to assign the writing of the various chapters to particular individuals. All authors of the manual donated their time and talents to this project, as did the editor and co-editor.

Completed manuscripts were submitted to the editors. In some cases, manuscripts were rewritten to conform to the standards and style of the manual. Upon completion of the editing, the manual was printed and sent to every licensed physician within the state via U.S. mail.

This document seems like something other CFS organizations could use. It has the cachet of being vetted by mainstream academic and governmental medical organizations in New Jersey . One would think that would help in getting other states to take a closer look at CFS. Is the Manual being used elsewhere?

NJCFSA’s Consensus Manual experiences phenomenal success. However, there was an impediment to success that needed to be overcome. The copyright of the Consensus Manual was held by three parties: the New Jersey Department of Health and Senior Services, the University of Medicine and Dentistry of New Jersey, and the Academy of Medicine and Dentistry of New Jersey. The first request to reproduce the manual by an outside source raised these copyright issues. We are extremely pleased that Dr. Kenneth J. Friedman, of our organization, was able to negotiate a new copyright agreement wherein the manual may be reproduced with the permission of NJCFSA without cost, provided that the reproduction of the manual is for educational purposes only, that the manual is reproduced in its entirety and that no profit is made in the reproduction or distribution of the manual.

This new copyright agreement has permitted the State of Vermont ’s Department of Health to list the Consensus Manual as a physician resource for the diagnosis and treatment of CFS on its website. As in New Jersey , Vermont state legislators were educated as to the need for the availability of a CFS diagnosis and treatment manual in their state.

An appropriation was made to handle the associated costs of providing the NJ manual to physicians in the State of Vermont . The appropriation was given to the Vermont Department of Health (VDH) which decided to establish a link to the online, pdf version of the NJ manual with the further agreement that any physician of the State of Vermont (including physicians) could request and be supplied with a hardcopy of the Consensus Manual. VDH will print and mail a copy of the manual to the requesting individual at no charge. The NJCFSA Consensus Manual contains a chapter dealing with legal issues which are not totally applicable in the State of Vermont . Accordingly, a new “legal” chapter has been written by an attorney in Vermont as a companion chapter for the Consensus Manual in Vermont . That Vermont version of the “legal” chapter is also available through the VDH website.

NJCFSA also received a request from the national CFS support group of Japan to have the Consensus Manual translated into Japanese and to have the Japanese version of the manual mounted on their website for the Japanese people. That has been accomplished.

The success of the NJCFSA Consensus manual has caught the eye of the IACFS. The manual has prompted the IACFS/ME to realize that there are no emergency room guidelines for the treatment of CFS. The IACFS/ME is currently developing emergency room guidelines for ME/CFS patients which will be incorporated into both on-line and hardcopy emergency room resources. NJCFSA is proud of the role it is playing in providing and stimulating ME/CFS education.

Pediatric Program

The Youth Education Committee (YEC?) in the NJCFSA has been remarkably productive. How did this group get started?

The Youth Education Committee was started by Betty McConnell in 1995. Betty, as one of the founding members of the NJCFSA board of trustees, was the only board member who not only had CFS, but also had a son with the illness. It seemed natural for her to take up the advocacy for children. She quickly recruited NJCFSA president and former educator, Jon Sterling, to the committee. Betty also invited Peg Walk to join the committee because of her involvement with her daughter, Sharon, who founded the first pen pal club for children and adolescents with CFS. All three volunteers were dedicated to increasing awareness of Pediatric CFS in New Jersey .

The Youth Education Committee has done a lot of work in assembling; it put together a pediatric education packet for physicians, school administrators and parents. Committee representatives exhibit at the annual New Jersey Education Association Conference and several medical conferences, and it has produced workshops for school administrators, nurses and teachers regarding CFS . On paper, at least, this appears to have been quite a successful effort. How is it showing up on the ground? Are children with CFS getting the proper care and understanding? Are you hearing back from parents that their children are getting helped?

The only way we have judged our committee’s success is by the many phone calls we are no longer receiving. Yes, we are still getting calls from parents asking for help dealing with their children’s schools but, compared to when we first began, they are few and far between. We have also found that when we do hear from the parents, and we send them our pediatric education package of information, the schools seem to be more receptive to the information.

In all the years of our committee’s work we can only recall one case in New Jersey where the parent of a child with CFS was accused of having Munchausen Syndrome by Proxy (MSP). A school nurse reported a parent to DYFS (Division of Youth and Family Services) accusing a mother (of a diagnosed CFS teen) of MSP, because she felt the student was going to too many doctors. When we were called for help, we educated the parents, the school and DYFS. This particular incident gave our committee the idea to educate every DYFS office in New Jersey . After mailing them the pediatric education packages, we were contacted by DYFS requesting a lecture for their counselors. Dr. Kenneth J. Friedman gave that lecture. His “ABC’s of CFS,” can be found on our website. Our committee is constantly inspired by the phone calls we receive from parents. Their needs usually become our future awareness projects.

Our committee has grown to include Pat LaRosa, our first vice president, who happens to be a school nurse. Pat has been able to reach out to other school nurses by giving lectures and exhibiting at their conferences. Our committee has also welcomed Youth Trustee, Marissa Newell. Marissa is a constant inspiration to our committee.

To sum up our success – We no longer have to knock on any more N.J. Educational Association doors, because we made ourselves visible and known, they are now knocking on our door…quite often.

We often hear how difficult it is for CFS patients and organizations to get a hearing on official levels but this committee appears to have been quite successful. How were you able to get your message across to education officials? Did you have contacts in the education community? Was it simply through sheer persistence? Did you find someone with CFS on the ‘inside’?

We got our message across by contacting the educational organizations one by one with our yearly pediatric awareness projects and yes, we did have one important contact in the educational community. Betty McConnell had a friend/neighbor who worked for the New Jersey Education Association (NJEA), which is a teacher’s union of 200,000 members. Her neighbor was very supportive of her educational efforts and was instrumental in getting NJCFSA invited to the annual NJEA convention in Atlantic City . Until his help, we were not able to get our foot in the door with this very prestigious educational organization. The NJEA convention exposed us to school administrators, teachers, school nurses, guidance counselors, and school psychologist and school support staff.

After starting at the top, we started working our way down by exhibiting at individual educational organizations in N.J. (Counselors, School Nurses…). We had no trouble getting our foot in those doors because we had the exhibiting reference of NJEA. Our pediatric awareness projects, which always included mailing our pediatric education package, were very effective, but it wasn’t until we started exhibiting and meeting the educators face to face, that we started making progress. We exhibited at NJEA and the New Jersey State School Nurses convention again this year.

We continue to exhibit and distribute the latest information on ME/CFS in children and adolescents. We must add that the Youth Education Committee is successful due to the financial generosity of our membership. We have an approved budget for our educational efforts each year.

How would you assess the education community’s response to your efforts?

We have found that the educational organizations are appreciative of our educational efforts. 2007 was a banner year for our Youth Education Committee. We were asked by both the New Jersey Education Association (NJEA) and the American Academy of Pediatrics/New Jersey Chapter, to write articles for their statewide newsletters. Both organizations were interested in the newly published IACFS/ME pediatric case definition. Dr. Kenneth J. Friedman and Dr. Rosemary Underhill wrote those articles which can be found on our website. The NJEA Review is mailed to 200,000 New Jersey educators and The New Jersey Pediatrician is emailed to 12,000 pediatricians in New Jersey .

Could your pediatric program be reproduced in other states? Have any other CFS support groups been in contact with you about duplicating it?

Our pediatric programs can be easily reproduced in other states. It just takes a little research to identify each educational organization, contact its president (start at the top), keep writing, calling or emailing. Keep contacting them until you get your foot in the door. Since our programs are successful, other state ME/CFS organizations can offer us as a reference, or point them in our direction by asking them to visit our website and view our published articles.

If an organization has limited funds for exhibiting or mailing educational materials, they can ask to give a lecture. Sometimes you are even given a stipend for a lecture and some educational organizations give reduced exhibiting rates to non-profit organizations. No other ME/ support groups or state organizations have contacted us to duplicate our work. If contacted, we will surely try to help.

The New Jersey CFS Association’s High School Scholarship is the only one of its kind in existence, besides awarding a $1,000 scholarship to the students, are there any other benefits to the scholarship program?

2547-NJCFSAScholarship__4.jpgThere are many benefits of the NJCFSA High School Scholarship program. Our high school scholarship program was established by Betty McConnell in 1998. The first scholarship was awarded in 1999. We were pleasantly surprised by its first benefit – creating awareness. By mailing our scholarship to every high school in New Jersey (public, private, charter), 680 in all, it created a tremendous amount of awareness. We received many phone calls from guidance counselors asking us for more information about our organization – but more importantly – about the illness.

The main goal of the high school scholarship program was to encourage ME/CFS students to pursue a higher education, in spite of their illness. We also wanted to financially support their dreams. The awareness that came with our initial mailing was an added bonus. The awareness it created for the student’s physician was an additional benefit. One application requirement is to have their physician complete a “Physician Diagnosis Confirmation Form.” The doctors found our organization and we found them. The bonus benefit is that several of those ME/CFS students have later gone on to volunteer for our organization as either a Youth Trustee or a Trustee. Their input has been invaluable to our organization.

Activism on the State Level

You’ve dealt with many different professional medical and educational organizations in New Jersey . What have you learned from dealing with them? Is there a right way to approach these groups?

NJCFSA collaborates with other state, national, and international organizations concerned with ME/CFS. These organizations are patient advocacy groups, medical research groups, hospitals, pharmaceutical companies, law firms and government agencies. Our organization makes contact with these groups at support group meetings, conventions, medical conferences, fundraisers, May Awareness events, Lobby Day events, and at committee meetings of the CFSAC. NJCFSA also approaches groups through phone, mailings, and the Internet.

The NJCFSA represents the interests of its members with public education, publicity/media coverage, and public policy. Representatives exhibit at medical and educational conferences. Speakers are available to address interested organizations. Advocates run PR campaigns, send out press releases and give radio, TV, and on-line interviews. Activists meet with State and National Health Agency Officials and Congressmen.

NJCFSA has learned that through networking and cooperation with other organizations, significant changes can occur. When groups band together, greater awareness and funding is raised for ME/CFS.

Conferences

The NJCFSA Conference: Every year you put on a CFS Conference with presentations by well-known CFS physicians, researchers and/or advocates. You’ve been in existence since 1995. When did you start putting on the conferences? How did they start? Beside the obvious benefit of patient education are they important in any other ways?

We held our first conference on October 1, 1995 . NJCFSA co-sponsored with Monmouth Medical Center , which was the host of our Monmouth County Support Group. Our entire board of trustees was involved with planning and working on our first medical/patient conference. We also had the help of the Monmouth County support group leaders and many of their support group members. We invited our NJCFSA medical advisors as well as key CFS physicians and researchers of New Jersey and New York to speak. Our first conference was a huge success as our conference room was filled to capacity and we had to turn people away. As with all of our conferences it was videotaped for our members who were too ill to attend and we added it to our lending library.

The NJCFSA Conferences present renowned speakers who provide up-to-date information on ME/CFS. These conferences also bring together members of the patient, advocacy, medical, scientific and legal communities to network and to share concerns about ME/CFS.

NJCFSA typically hosts a breakfast on the morning of the conference for the speakers and trustees. This event is an opportunity to get acquainted and share concerns about ME/CFS and is also an avenue for physicians and researchers to propose possible future research collaborations. During the conference, both patients and professionals will hear current information about advancements in research, technology and treatment for ME/CFS. NJCFSA, in conjunction with the sponsoring hospital, offers Continuing Medical Education (CME) for physicians and Nursing Contact Hours (CNE) for RN’s.

Exhibit tables provide information for attendees and permit an opportunity for dialogue during lunch and refreshment breaks. A membership table encourages people to join the NJCFSA. The publicity surrounding the conferences raises awareness for ME/CFS. Other state and national organizations publicize our conference by posting our announcement on their web sites and publishing our announcement in their newsletters. A conference booklet, featuring ads purchased by supporting individuals, companies and agencies is distributed to attendees. Through the years, these conferences have been conducted in collaboration with either Monmouth Medical Center or Robert Wood Johnson Hospital . Their assistance has been invaluable to the NJCFSA conferences.

The NJCFSA Medical Scholarship

The NJCFSA sponsors a $3,000 scholarship for a second year medical student at the New Jersey Medical School . The grant requires that applicants write a substantial essay on CFS diagnosis and treatment. Why was this grant created? What has the response been?

The NJCFSA Medical Student Scholarship is the idea of long-time member and office holder of our organization – Betty McConnell. Many physicians in practice have not learned about ME/CFS either in medical school or in continuing medical education courses. Some physicians have heard of ME/CFS but are of the opinion that it is not a physical ailment but, rather a psychological one. NJCFSA believes that there may be an unspoken attitude preventing some physicians from accepting ME/CFS: if I did not learn about it medical school, it is not important.

2548-NJCFSAMedSchol..jpgEfforts to bring ME/CFS into the medical school curriculum have failed. NJCFSA Board Member, Dr. Kenneth J. Friedman, when an Associate Professor of Pharmacology and Physiology at the New Jersey Medical School , was unsuccessful in attempts to incorporate CFS into the New Jersey Medical School curriculum. Both as a medical school professor, and as a member of the Education Subcommittee of the Chronic Fatigue Syndrome (Federal) Advisory Committee, letters written to the American Association of Medical Colleges and the American Medical Association requesting information about the inclusion of ME/CFS in medical school curricula were and remain unanswered.

Therefore, to bring awareness of ME/CFS into the medical student educational process, the NJCFSA medical student scholarship was created. In designing the scholarship program, care was taken not to compete with medical school curriculum time. Our scholarship program is designed to supplement, not compete, with medical school education. The summer between the first and second years of medical school is the only time that an enrolled medical student is not performing coursework. Therefore, the scholarship program is run during that time. Students are asked to write an essay with source references on a specific ME/CFS-related topic. The essays are then read by a panel of judges selected by NJCFSA who select the winning essay.

New Jersey has three medical schools and the NJCFSA scholarship program, as originally designed, was only reaching medical students in one of the three schools. The Board of Trustees of NJCFSA charged the Medical Student Scholarship Committee, chaired by Dr. Kenneth J. Friedman, to investigate the possibility of expanding the program to include all three medical schools. Accordingly, a new program was established for academic year 2006/2007.

The University of Medicine and Dentistry of New Jersey is financially assisted by a philanthropic entity known as the Foundation of the University of Medicine and Dentistry of NJ. NJCFSA has entered into an agreement with the Foundation to provide the Foundation with $60,000 as an endowment for the NJCFSA Medical Student Scholarship. That endowment, once achieved, will spin off approximately $3,000 per year in income which will be awarded as one NJCFSA Medical Student Scholarship. The Foundation will run the scholarship program through all three of New Jersey ’s medical schools. Moreover, the Foundation has the ability (through its relationship with the University) to directly apply the $3,000 award to the winning medical student’s medical school tuition. As an interim agreement (until such time as the scholarship program is fully endowed), the Foundation has agreed to run our scholarship program through all three medical schools with the award funds coming directly from NJCFSA.

This scholarship is a patient driven and patient supported approach to stimulating medical student education about ME/CFS. Until such time as medical schools are willing to incorporate ME/CFS into their curricula, scholarship programs modeled after the NJCFSA program will encourage medical students to learn about ME/CFS. To date, the NJCFSA Medical Student Scholarship program is the only such program in existence and is the only mechanism for providing future physicians with medical school education of ME/CFS.

In 2009, the patient advocate group P.A.N.D.O.R.A. (Patient Alliance for NeuroEndocrineImmune Disorders, Organization for Research and Advocacy) provided funding to the Vermont CFIDS Association to establish a Student CFS Scholarship. The Wisconsin CIFDS Association, hearing of the NJCFSA program, also decided to establish a Medical Student Scholarship Program. Both the Vermont CFIDS Association and the Wisconsin CFIDS Association currently run Medical Student, CFS scholarships modeled after the NJCFSA program.

Future

You’re doing an awful lot but CFS has many needs. What is keeping the NJCFSA from doing more? Do you need more money? Do you need more active members? Are you missing people with certain types of skills or connections? What is holding back the NJCFSA from accomplishing even more than it is?

As with most non-profit organizations, the NJCFSA would be able to accomplish more if additional funding were available. Obviously, more members would also mean more funding, so we are always striving to find new ways to bring in new members, as well as contributors. Most members are also patients. Large scale fund-raising consumes enormous amounts of energy. There appear to be grants that might be appropriate for our organization, but it is difficult to find people who are willing and capable to write those applications. Additional able-bodied volunteers could possibly increase our offerings. We are always looking for more of them.

Is the NJCFSA on firm ground? Do you see any pitfalls ahead for the NJCFSA?

The NJCFSA is a solid organization which has been in existence for fifteen years. Due to the hard work, resourcefulness and initiative of our trustees and volunteer members, we are optimistic about our future and look forward to accomplishing even more in the years to come.

What do you see the future holds for the NJCFSA? Do you have any new initiatives planned?

The function of NJCFSA is to promote the needs of ME/CFS patients. Our view is that those needs fall into three categories: A cure, improved treatment, and financial support.

NJCFSA hopes to:

  • promote research within the state of N.J. utilizing its own membership in such studies
  • increase the involvement of the New Jersey pharmaceutical industry in its research efforts
  • increase its involvement in physician education by increasing medical student education through its medical student scholarship program
  • increase its education of physicians by becoming a continuing medical education provider – NJCFSA will not have to partner with hospitals or other institutions in order to provide physician education
  • In order to serve the financial and social needs of its membership, NJCFSA seeks to be more politically active within the State.
  • Secure funding to update and reprint the physician’s manual
  • Raise funds to endow the medical student scholarship and the HS scholarship.

Organizational Issues

What is your current membership level? Have your membership levels fluctuated over time? If so do you have any idea why?

We have grown in membership over the years and like other organizations, the economy and other factors impact membership levels. We have had the good fortune to have a good membership, although it has dropped somewhat in recent years.

How do you get your members? Do they find you or are there any ways that you actually solicit for members, i.e. advertise for them?

Recruiting and retaining members has always been a priority and we have tried to use every opportunity open to us. We

  • Actively recruit at NJCFSA conferences
  • Include a membership form in each edition of the NJCFSA Newsletter
  • Provide membership forms with materials when exhibiting for the NJCFSA
  • Actively encourage members of NJCFSA –affiliated local support groups to join the NJCFSA
  • The membership form is available on the NJCFSA website


Funding is a vitally important part of any organization. Where do you get the money to run the NJCFSA? Do you have any ‘large’ donors? Is the NJCFSA expensive to run?

As with most non-profit organizations, the NJCFSA is run on membership, donations and sponsorships. Like all organizations, we benefit from donors large and small, corporate and philanthropic, and we try to maintain our expenses within such budgetary parameters. We encourage our board to think of the importance of acting professionally by maintaining fiscally responsible policies in order to keep NJCFSA a viable and functioning organization, and to be accountable to our membership for how we raise and spend funds.

If we viewed the NJCFSA as a business with a paid staff and you added up all the contributions by the members about how many fulltime employees would you say you had?

Unfortunately, because we have many members afflicted with ME/CFS, their functional contributions vary so we cannot answer this question.

What kind of role do people who don’t have CFS play in the NJCFSA?

Family, friends and concerned individuals create an important hands-on support network for our organization. We encourage anyone who wants to contribute time and/or funds in a responsible manner to further the goals of NJCFSA.

Do you have any other advice for people interested in building a support/advocacy group?

Don’t hesitate to ask advice from other successful groups and to make us of their ideas. There are people with CFS longing for a place that welcomes them and understands the daily challenges they face. Start small, think positive and dream like you did before you were ill.

The New Jersey Chronic Fatigue Syndrome Association Website

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