Mark Iverson's Resignation Letter-CAA
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- Date: Fri, 13 Jul 2001 17:13:18 -0400
- Reply-To: [log in to unmask]
- Sender: Chronic Fatigue Syndrome and Fibromyalgia Information Exchange <[log in to unmask]>
- From: "Ed Isenberg <[log in to unmask]> via Co-Cure Moderators" <[log in to unmask]>
- Subject: NOT,ACT: Founder Marc Iverson resigns from CFIDS Assn.
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- From: Ed Isenberg <[log in to unmask]>
Marc Iverson (PWC, 22 years) was the Founder and, for its first 13 years, Chairman of The CFIDS Association of America. Diagnosed with "chronic Epstein-Barr virus" after a seven year struggle, Marc organized a local support group, networked and collaborated with other CFS pioneers around the world, and in 1987 began funding research. He recruited a handful of volunteers and, rejecting "CFS" as horribly demeaning, gave birth to a new name, Chronic Fatigue & Immune Dysfunction Syndrome ("CFIDS"). Marc then founded what is now The CFIDS Association of America, and began publishing The CFIDS Chronicle on a monthly basis. Marc, a successful businessman before becoming disabled with CFIDS, employed his knowledge and skills to build the largest charitable organization in the world dedicated to conquering CFS / CFIDS / ME.
This Spring Marc engaged in lengthy discussions with the Association's President & CEO (Kim Kenney), but was unable to resolve numerous differences of opinion with her on major policy issues. He therefore resigned from the Board of Directors of The CFIDS Association of America and all leadership positions effective 8 AM on June 22nd, 2001. As a close friend and fellow CFIDS activist, Marc has shared his letter of resignation with me. I have obtained his permission to circulate his statement because I feel it is newsworthy to the PWC community. Marc and I were also concerned that the reasons for his resignation might become subject to rumor, misinterpretation or misrepresentation.
Marc has asked me to make special mention of the fact that his resignation letter is copyrighted. While permission is granted to reprint it for any non-profit purpose, it must be in whole and without editing or excerpting, and must include the copyright notice as part of such reprinting. Marc was quite clear that, if necessary, he is prepared to take action to make sure his remarks are not altered in any way or taken out of context.
Finally, Marc also emphasized that, while he strongly believes the Association should shift its priorities, he has no desire to impair the many constructive programs (such as pilot research studies) the Association funds. He feels people should make their own decisions as to whether, how, and to what extent they should support The CFIDS Association of America and/or any other CFIDS organizations. However, Marc did note that since he founded The CFIDS Association it has continuously accepted "earmarked" contributions (e.g., for research) and that such restricted gifts provide donors with a significant degree of control over how contributions are utilized.
Edward D. Isenberg
Resignation Letter
Formal Statement of Resignation from
The Board of Directors of
The CFIDS Association of America and
All Association Committees and Positions of Leadership
Marc M. Iverson, Founder
June 22, 2001
Fellow Directors of The CFIDS Association of America, I, Marc M. Iverson, hereby resign from the Board of Directors of The CFIDS Association of America, and all Association committees and positions of leadership, effective 8:00 a.m. EDT, June 22, 2001.
As the founder of The CFIDS Association of America, Chairman of the Board of Directors of the Association for 13 of its 14 years, a major donor and fundraiser for the Association, and the sole permanent member of the Association's Board of Directors, I have reached this decision with great difficulty and extensive contemplation, and only after lengthy discussions with the President and Chief Executive Officer (CEO) of the Association, K. Kimberly Kenney, for whom I continue to have professional respect and admiration.
There are five primary reasons for my resignation.
First, I am overwhelmed with family obligations and the struggle with my own health problems.
Second, I have a different vision for the Association, and different priorities for the allocation of Association resources, than the CEO. I favor aggressive/activist "PWC focused" strategies with the objective of providing the Association's constituency (persons with CFS/CFIDS and related disorders) with what it wants. In contrast, the CEO favors more conservative "mainstreaming" strategies intended to define and communicate CFS/CFIDS issues to the public (including the medical community, the media, and policy-makers) with the objective of making CFS/CFIDS a mainstream disorder.
Third, I hold a different position than the CEO with respect to certain critical Association policies and programs. For example:
- I favor and the CEO opposes immediately adopting a very aggressive stance opposing the discriminatory and incredibly damaging name CFS/CFIDS (chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome) and I believe efforts to change public attitudes are virtually hopeless and wasted with the present name;
- I favor and the CEO opposes directly providing a system that permits patients to exchange health care (physician) referrals;
- I favor and the CEO opposes immediately allocating resources to collect and disseminate far more information on treatment;
- I favor and the CEO opposes immediately revamping the Chronicle to make it more timely, accurate and informative;
- I favor and the CEO opposes allocating/raising resources to build a state-of-the-art fully interactive web site that serves as a real time "clearing house for information" thereby enabling PWCs and interested parties to exchange information and ideas in a safe and civil environment;
- I favor and the CEO opposes immediately developing specific, objectively measurable goals and benchmarks to measure the success or failure of all Association programs and the staff paid to implement them;
- I favor and the CEO opposes placing a much greater emphasis on raising funds for, initiating, and reporting CFS/CFIDS research; and,
- I favor and the CEO opposes gradually shifting resources away from programs not financially supported by Association donors, such as the Association's extensive lobbying efforts.
Fourth, I have been caught in a "moral dilemma" of defending major Association policies/actions with which I strongly disagree.
Fifth, I can not fulfill my responsibilities (as defined in the Association Bylaws and further outlined in the 2001 Association Operating Plan).
Fellow Directors, I believe I've made reasonable (if not extraordinary) efforts to state my case, but have been unable to persuade Ms. Kenney that the Association should drastically change. Ms. Kenney is the driving force behind the Association and, although major policies and plans must be approved by the Association's Board of Directors, Ms. Kenney (as CEO) and her professional staff are charged with the responsibilities of both developing and implementing the Association's policies and plans. Without Ms. Kenney's support, it is unrealistic to believe that the positions I advocate will be adopted by the Association's leadership or implemented. Accordingly, it is time for me to step aside.
I'm proud of what the Association has stood for and accomplished in the past. I wish you well individually and as an organization.
Marc Iverson
(c) 2001 Marc Iverson. Permission is granted to reproduce this statement in whole, without editing or abridgement, for any nonprofit purpose. This copyright notice must be included in any reproduction. All other rights reserved.
