Marc Iverson's resignation letter as posted to Co-Cure on July 13, 2001, courtesy of Edward D. Isenberg:
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
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:
(1) 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;
(2) I favor and the CEO opposes directly providing a system that permits
patients to exchange health care (physician) referrals;
(3) I favor and the CEO opposes immediately allocating resources to collect
and disseminate far more information on treatment;
(4) I favor and the CEO opposes immediately revamping the Chronicle to make
it more timely, accurate and informative;
(5) 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;
(6) 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;
(7) I favor and the CEO opposes placing a much greater emphasis on raising
funds for, initiating, and reporting CFS/CFIDS research; and,
(8) 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.