Marc Iverson's Letter of Resignation from CAA

For those who are unfamiliar with the history of the CFIDS Association of America (now SolveCFS), Marc Iverson, a patient, was its founder. When it was started in 1987, the CAA was a dynamic organization, representing the interests and concerns of patients. Within its first year it had begun to publish a newsletter, the CFIDS Chronicle, and had made donations to research. Within four years it received nonprofit status.

In the mid to late 1990s, the CAA began to steer away from its role as the voice of the patient. The reasons for the shift are documented in Marc Iverson's letter, but basically they can be summed up as a withdrawal from patient interests in favor of the interests of the organization. These interests are financial (6-figure salaries, and millions of dollars in government grants) as well as political (staying on good terms with government grantors and agencies).

There is a lesson to be learned from the fall of the CAA. National charities which are dedicated to the needs of the communities they serve do not succumb to corruption, even when they handle millions of dollars. In the case of the CAA, the abandonment of its original intent is due not just to the influence of money and power, but to a profound lack of moral character and integrity on the part of its leadership.

I have reprinted Marc Iverson's letter of resignation below, because even with a "rebranding" and new CEO, it is clear that the CAA (aka Solve CFS) has not fundamentally changed since it went off the rails more than a decade ago.
________________________________________________

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.

[This Message was Edited on 11/18/2006]

1 comment:

  1. I don't understand. What does "CAA" stand for? I am very affected by neurological ME/CFS to the degree my IQ has gone from 147 to 133. So, I'm not sure if I got this posted subject matter correctly.
    I honestly had thought the CFIDs association of America was the only true voice of the patients. Our only effective voice at the government level.

    Am I wrong? I've been very isolated by the illness. All I know it's what I've been able to find out there before I became too sick to investigate and advocate. I was diagnosed using the CCC, which I discovered after a TON of research. I am very ill and getting wirse at what, to me, is an alarming rate. I am frightened as I am single mother to a 13 year old child wuth Aspergers. She NEEDS me. I'm only able to get out for dr. Appts, after which I am far sicker for weeks. I am for all practicle purposes, housebound. Only leaving my room, and bed, for using the bathroom, or getting something to drink from the kitchen. that is IT.
    Whom do I trust? Do we have a representation before governing bodies and current research? Have I been mislead by talk of hope for the CDC, with solve cfs at the foregroung inviting patient involvement in the meetings? Are we no closer to changes in attitudes and conception towards the fact that this is a physical illness?
    Is Phienix Rising a true voice that helps in an accurate point of view, and representation of ME/cfs? If not... Then who is? I dont know up from down here. Who, if anyone, is trusted and true in the US? I appreciate your time and your blogging! I am too ill to blog, and would only hurt others with well meant, yet erroneous, infirmation.

    ReplyDelete

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