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Posted to Co-Cure Fri, 13 Jul 2001 17:13:18 -0400 by Ed Isenberg

Marc Iverson Resigns from Board of CFIDS Association of America

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

© 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.

Posted to Co-Cure Sat, 14 Jul 2001 15:41:06 -0400 by John Herd

Marc Iverson Deserves Our Appreciation

Putting aside all the political viewpoints that surround CFS/ME, I think we owe Marc Iverson deep appreciation for all he has contributed over the years.

Though we still have many of the same goals we had when Marc became involved in CFS/ME support and advocacy, we have moved ahead in many ways. Public misunderstanding of the illness erodes slowly but a great many more people take our illness seriously than they did in the 80s. We are still shackled to the inappropriate name CFS, but at least the government has been forced to address a name change. As little as we like the name, far more doctors take the illness seriously than in the 80s. The amount of CFS/ME research is far from adequate, but that too has increased significantly over the years. In terms of trying to obtain disability benefits, patients aren't blazing the new frontiers they were in the 80s. And as isolated as many of our lives may be, on-line and off there are far more support groups and resources for us than there were back in the 80s.

The gains we've made are due to a great many people's efforts, but no single person has directly and indirectly likely contributed more to the CFS/ME community than Marc has.

I hope many will put past and current politics aside and thank him for all his efforts over the years.

John Herd

Posted to Co-Cure Mon, 23 Jul 2001 17:43:57 -0500 by Co-Cure Moderators

The CFIDS Association of America's letter to members regarding the resignation of Founder Marc Iverson

The CFIDS Association of America's letter to members, dated July 23, 2001, regarding the resignation of Founder Marc Iverson from its Board of Directors can be read at


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