Why CFIDS Assoc Founder Resigned

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Nov 18, 2006.

  1. mezombie

    mezombie Member

    Findmind: You asked why Mark Iverson, founder of the CAA, resigned. I found his resignation letter, which says it all, and have posted it below.

    Luckily, this (and other) message boards, the National CFIDS Association, and others are taking up the slack Iverson refers to.

    The main problem, as I see it, is that we do not have the type of organized, assertive advocacy Mark is referring to.

    How can the CAA effectively critcize the CDC? That would be biting the hand that feeds it, given the amount of CDC dollars the CAA is dependent on.

    Here's Iverson's 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:

    (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]
  2. sues1

    sues1 New Member

    It says a lot and it shows where this needs to go. I respect this man.

    Susan
  3. mezombie

    mezombie Member

    Being that was the year I was finally diagnosed with CFIDS and joined the CAA (I'm still a member), I will say that, in my opinion, Mark's observations (made in 2001) still paint a pretty accurate picture of where the CAA is today.

    Where are the aggressive/activist "PWC focused" strategies Mark was hoping for?

    Actually, the CAA is even more conservative and mainstream than it was in 2001. Much of its financing comes from the CDC, making it essentially a CDC contractor for the CDC's ideas about CFS.

    Where is the interactive clearinghouse website Mark favored? Here, at ProHealth, not at the CAA. And the timely collection and dissemination of treatment information? Again, here, not through any CAA effort.

    Did the CAA ever shift more resources to research and less to its overpaid, part-time (not even half-time) lobbyist? If so, it's news to me.

    I know the CAA well. I know the staff and the board. And, like many people, I feel they have moved away from the feisty organization Mark Iverson founded toward being an arm of the CDC.

    Who will speak up for us now?
  4. findmind

    findmind New Member

    You darling, you! Thank you so much.

    The Association was just at the point where activism could have taken place when Kim Kenny (Cleary) took over, wasn't it? They had taken years (of my money) to get to that point.

    I don't understand why anyone still pays membership dues to this organization; they are (in cahoots with the CDC) pushing graded exercise, which shows they have put our cause back by another ten years at least.

    At a time when they did have some clout, they backed off regarding the name change; and now look where we are: "branding" the name CFS all over the country and possibly the world! I cannot sanction it.

    I cannot help but think that because Marc was sick with CFS he was unable to muster the energy to make his views predominate; we all know how hard it is for a PWC to have brain power along with physical stamina.

    How many of you have wondered this: if we all stopped giving our money to the so-called charities, how fast do you think there will be found cures for diseases? I think many of them have become self-perpetuating, and if they actually find cures, where would they be? All those highly paid CEOs and staff would be out of a job.

    Don't think I put that correctly, but hope the idea comes across. I intend to support all volunteer groups like the NCF as my money then goes to research, not to CEOs and staff.

    Thanks again, mezombie for the valuable input here!

    There's always hope!
    findmind
  5. julieisfree05

    julieisfree05 New Member

    I'm very familiar with Marc Iverson's founding of this organization and its history (once again, see "Osler's Web" for the real story), but I had never read this letter!

    Mr. Iverson fought the CDC in every area, and it is a travesty that his organization jumped into bed with the CDC.

    When the CAA was established, they WERE an activist group! They printed research that could not get published anywhere else, called for the resignation of Straus (the government's "lead CFS researcher") due to his disparaging and FALSE public comments on CFIDS patients, and they helped uncover the misappropriation of funds by the CDC in the area of CFS research.

    The CAA sold out the patients in order to get on the good side of the CDC, and they are still doing it today.

    - julie (is free!)
  6. deliarose

    deliarose New Member

    but you could tell from its website that this organisation was fairly useless.

    Otherwise, we'd be on its message board, right?

    delia
  7. findmind

    findmind New Member

    thank you for your response!

    I have publicly criticized ProHealth here, but I value them also. I would love to see them send some money to the NCF: share the wealth, you know?

    Yes, I do believe the NCF will find out the major reason for the destruction of the RnaseL pathway, which then prevents our immune system from attacking appropriately.

    It may be the PIV-5, I don't know; I only know they are doing the deepest research (going back decades), trying to follow the trail that shows what other researchers have found but that may have not made it into the public eye.

    Yes, I believe many orgs are self-interested: Nixon declared the so-called "war on cancer" and that in itself is reported (by the Common Cause Foundation in Canada) to be a deep black budget cover for biological warfare.

    So milllions of people have donated to various cancer orgs, for nigh onto 60 years, and only now are geneticists beginning to find answers for patients. All the money donated actually helped the big pharma industry more than it helped the patients.

    How much has been raised for Katrina victims? How much did those same victims get? How much is being "held" until some unattainable goal is (not) reached by the victims?

    Yes, I am skeptical. I'm a senior gal who has seen and done much and I am disillusioned by our CDC and NIH. We are supposed to be the greatest in the world, but other countries are fast overtaking us.

    Actually, that's alright in my book: I don't care who finds answers for us, the Germans, the Belgians, the Japanese (who call this Post Viral Syndrome), whatever. All I want to support are those who are interested in the Patient, not the money from patents.

    I do believe tax-funded institutions like the NIH and the CDC have no right to find answers to medical mysteries, and then the lead researchers file for patents on their findings, while the patients wait and hope.

    Of course, there's always hope!
    findmind


  8. findmind

    findmind New Member

    Well, let's decide what we want to protest about, ok?

    I give Rich all the credit for ProHealth and what he has done for patients; if I had had the drive, intelligence, and diligence he has exhibited, I would have founded ProHealth myself.

    I do not begrudge that he may make a good living by selling the products he has taken the time to research and formulate and offer at very good prices to us. I care that he has donated so much to trying to find answers for us; I just take issue with him as to whom he donates sometimes.

    I would really be delighted if some of that money went to the research the ncf is doing, that's all. He has a right to donate it to whomever he pleases; he earned it.

    I'm not so sure I'd like to be able to email others; one does not know anyone by communicating with them here or anywhere online. I can really understand how those rules protect us.

    Thanks for adding to the debate! Or discussion, or whatever this is, LOL!

    findmind

  9. findmind

    findmind New Member

    I see what you mean. I don't use other message boards or online chats (can't live chat on my webtv; maybe will change that).

    However, having been a SG leader at one time, can you imagine 450 people emailing you thru ProHealth asking about your diet?! LOL!!

    That's why we do have to post to a specific person and ask them what we need from them; they can then choose to do that enormous work, or, lead others to books, articles, or other postings they have made (or repost an old one) OR say they just don't have the energy!

    That way, a bunch of people are not asking the same question of one person; everyone can join in if they have info for us.

    I'm very tired, and hope I've been rational here...

    Hugzies to ya!
    findmind

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