Start as You Mean to Go On

I’m not sure which way to describe the ME/CFS community reaction to the announcement that Kim McCleary will be leaving the CFIDS Association: that people were so stunned you could hear a pin drop or that the news was the equivalent of a nuclear bomb detonation. Whatever way you describe it, the news is huge.

I worked closely with Kim during my service on the Association’s Board of Directors (2006-2011), and especially during my two years as Chairman. Kim is my friend, and my feelings about her announcement are both personal and professional. Most patients do not know how hard she has worked on their behalf. Kim dedicated herself to our cause, and has made tremendous personal sacrifices in service to that mission. I don’t think there is anyone who knows more about the politics of the disease, and few who understand the research better. In the last few years, she has been instrumental in the transformation of the CFIDS Association into a cutting edge research organization. It’s probably too soon to define her legacy, but she will forever be one of the giants in the battle against ME/CFS.

I know that some in the community will want to rehash various criticisms of Kim and decisions that she made. That’s up to them, but I will not. No one can lead an organization for twenty-two years without there being disagreements and debate. I see little value in revisting them now.

The real issue – and what I believe advocates and patients should be focused on – is where the CFIDS Association goes from here. Can the organization thrive without Kim? The answer is YES. Here’s why the CFIDS Association will continue to succeed:

  • Research – The quality of the Association’s research program is unmatched. Faster Cures has included the Association in TRAIN  – an initiative that encourages innovation in research and venture philanthropy. Strategic funding decisions have led to a 7 to 1 return on investment. For every dollar Association donors have invested in research grants, those researchers have secured an additional $7 in federal grant money. This success is unparalleled. In a recent webinar, Dr. Vernon described the Association’s cutting edge and unmatched patient-centered approach to research and finding treatments for the ME/CFS.
  • Vision – While Kim has been the visionary driver of the Association, the staff and Board are committed to innovation and cutting edge solutions. Suzanne Vernon is a big thinker and is passionate about the Association’s mission. She has recruited new researchers to the field, like Drs. Kathy and Alan Light, Dr. Gordon Broderick, and others. She sees the big picture of the disease, and is always looking for new and innovative ways to attack the problem. The entire staff recently completed a three-year strategic plan, and from what I have heard, Kim’s departure has required adjustments but not fundamental change to that plan. Combining that vision with the expertise of the staff and Scientific Advisory Board means that the Association will not lose step during the transition.
  • Staff – Kim has been the face of the Association, but the staff are some of the unsung heroes of this movement. This is not a 9-to-5-it’s-just-a-job group of people. The staff work harder for less reward than just about anyone else I have ever known. Their dedication, expertise, and persistence has made the Association’s success possible.
  • New Blood – Mark Stone and Leigh Reynolds have joined the staff within the last year, and both bring expertise from working with other disease populations. They have proven themselves in building other organizations with the support of patient communities, and they are bringing those skills to ME/CFS.
  • Profile – The Association is one of the most – if not the most – visible ME/CFS organizations to the outside world. Their proposal took the top prize in the Sanofi challenge. When the XMRV story first broke in 2009, the Board said they wanted the Association to be the source of credible and current news for both the ME/CFS community and others. Both Kim and Suzanne helped raise the profile of our disease by interfacing with new policy makers and influential people, and some of those people now serve on the Association’s SAB.

Kim’s long tenure may have created the impression for some that she was the Association, but that is not the case. The staff, Board, donors, and supporters have always been the lifeblood of the organization, and that has not changed. There is no doubt that Kim’s departure will mean a time of transition for the Association, but the mission and the plan to identify disease-modifying treatment for ME/CFS will go on. Thanks to Kim, the Association is off to a very good start.


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11 Responses to Start as You Mean to Go On

  1. Jill says:

    A start. 25 years is not a start. Those who have suffered and died from lack of treatment under the CFIDS Assoc failed policies and lack of leadership do not get another start. (While Suzanne Vernon chuckles about it in one of the webinars: All of the the PR and sales pitches and spin will not change this. Lipstick on a pig.

    As stated, they have been the main group acting as representatives at federal meetings, conferences etc. With the considerable resources they have had (paid staff, lobbyists, wealthy donors etc), there has been no meaningful progress in diagnosis, treatment or even awareness, beyond superficially creating a brand or occasional mention by the media. The merit of the investment should be judged by some measure of accomplishment viv a vis their purported goals and mission.

    Though I am certain that the same failed policies and approach will continue and are firmly entrenched.

  2. “I’m not sure which way to describe the ME/CFS community reaction to the announcement that Kim McCleary will be leaving the CFIDS Association: that people were so stunned you could hear a pin drop or that the news was the equivalent of a nuclear bomb detonation.”

    Very interesting word selection.

  3. cort says:

    thanks Jennie, it sounds like the CAA has a good foundation….

  4. Rich Carson says:

    While I love the CFIDS Association and I marvel over its amazing 27 year history, I am quite clear that the Association will be unable to exist unless someone is able to raise the more than one million dollars that Kim successfully raised every year. Raising money is the key to staying in business for a non profit organization, and it will be interesting to see what the Association can do with a new income generator in place. To be successful the new head of the organization will need the knowledge and talent that Kim had, and will have to be able to raise a lot of money. This is a very tall order to fill, and sadly, my bet is that the Association will fall within two years.

    • Jennie Spotila says:

      You are absolutely correct that a nonprofit must raise money to stay alive. But Kim did not raise the money alone, Rich. Board members and staff raised money with her. I raised five figures a year when I was on the Board, as have others. It will be a challenge, but people believe in the strategy and mission and they’ll continue to support it.

  5. Jill says:

    I remember when Marc Iverson resigned. There was major upset and sadness, as most saw exactly what he was referring to. This time, beyond the known “insiders,” there’s been practically nothing.

    Marc’s remarks and concerns were prescient and have come to fruition to the detriment of patients.

    The main problem is that we do not have the type of organized, assertive advocacy that Marc Iverson was referring to. CAA flip flops as convenient and mainly acts as a mouthpiece for whatever comes along. They are reactive, not proactive, on anything.

    They do have the business model down so have no doubt they’ll keep it going. Just nothing “PWC” (patient) centered as Marc figured out.

    Here’s Iverson’s 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:

    (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.

    • Jennie Spotila says:

      What is striking about these comments is that they are 12 years old. Many no longer apply, particularly since Mr. Iverson has continued his generous support of the CFIDS Association. As I said in my post, there are undoubtedly people who would like to revisit and rehash the mistakes they think Kim made over the last twenty-two years. I will not do so for one simple reason: it is not productive. The Association is moving forward with an excellent strategic plan, and is the best chance we have of finding a treatment in less than 15 years. I prefer to save my questions and debate and constructive criticism for what the Association does from here. That is the only test that matters.

  6. Jill says:

    Yes, what is striking is that these comments are 12 years old. But actually it is very relevant. The criticisms and concerns are just as valid now as they were then. The CAA has accomplished nothing of benefit to patients. It is very constructive to be honest and not keep supporting that which has failed and worked against us. Can’t expect people not to see the spin and to be this naive. Oopsie, they have it figured out now? Nothing at the CAA will ever change, Kim or not. And those who died and have suffered as a result of their ineptitude don’t get to start over.

  7. Patricia says:

    As much as I would like to believe things will change with the CFIDS Assn. of America now that Kim McCleary is leaving, I do not. When Mark Iverson was running the CAA, it truly represented the interests of patients. Mark Iverson did not receive a $178,000 salary (plus benefits), nor did he hire a CDC scientist to choose what research to support and pay her a six-figure salary.

    Things changed immediately when Kim McCleary wrested control of the CAA from Mark Iverson. So many members left the organization that it stopped publishing membership figures, and several years ago changed itself from a “membership” organization to a “research” organization. What this means, in essence, is that it is no longer concerned with the interests of patients, but is instead concerned with continuing the existence of the organization and the large salaries of its CEO and its Scientific Director.

    What has Kim McCleary accomplished during her tenure as CEO of the CAA?

    She has raised large sums of money. Now, what did she do with that money?

    She hired a CDC scientist to choose what research to support, and since then they have supported research which has resulted in NO EFFECTIVE TREATMENT for M.E. in twenty years. In fact, the amount of money spent for “CFS” by the NIH is going DOWN.


    “The estimates for 2013 and 2014 are published, with figures for prior years.

    NIH spending for Chronic Fatigue Syndrome (ME/CFS) went DOWN from $6 million in 2010 and 2011 to $5 million in 2012 and the estimate for 2013 and 2014 is $5 million.

    Whatever our so-called “advocate” organizations are doing, they are not helping ME patients. We are going backwards with NIH funding.”


    So, yes, McCleary raised a lot of money, but she spent it on the organization itself and on research chosen to win friends for the association among researchers and clinicians and not for the benefit the research might provide to M.E. patients.

    And time and again, speaking as though they speak for ALL M.E. patients, McCleary and Vernon have sold out the interests of M.E. patients.

    They have supported whatever got them “in” with government agencies and employees while selling out the interests of patients. And they have failed to notify government and media that THEY NO LONGER SPEAK FOR M.E. PATIENTS. They are no longer a “membership” organization; this means they no longer speak for patients. Why are they still pretending to do so? Why don’t they tell the media the truth?

    This would be a start. If the CFIDS Assn of America would STOP pretending to speak on behalf of patients and instead refer media representatives to real patients, they might start to regain the trust of patients. Instead, they continue to say that they speak for patients when they do not.

    So, honesty would be a start.

    The CFIDS Assn should start by saying publicly that it no longer represents patients.

    Then they should state their real purpose. They should say publicly that what they really do is collect large sums of money, pay enormous administrative costs and choose what research they will support. They fund a few studies done by researchers who follow the CFIDS Assn’s philosophy of using the broadest possible definition of the illness (“CFS”) which the Assn. is concerned with, including people who suffer from chronic fatigue and chronic pain, regardless of whether or not they have the other symptoms required by the CCC and ICC definitions. They should say that their funding of research depends on the effect of that research on the organization (CAA) and not on the effect of the research on patients.

    If they choose instead to say they speak for patients, then they need to do so in fact. They need to hear what those of us who have been sick for decades are saying and listen to us. Then they need to fund research that results in effective treatment, not the continuing circle of antidepressants, pain medications and sleep medications which they have been recommending.

    Most of all, they need to get out of their ivory tower where they listen to only the few “yes” patients, which some have said are their relatives and close friends, who support whatever they tell them to, and talk to actual sufferers. They listen to their “Yes” people and disregard what the multitude of real patients are saying. That needs to end if they want to try to regain patients’ trust.

    For anyone who is curious about why many people with M.E. do not trust Kim McCleary or her sidekick Suzanne Vernon, this will give you a start:,15293.msg146697.html#msg146697

    Patricia Carter

  8. floydguy says:

    I find it discouraging that there is a reluctance to look back. This is the perfect time to examine the effectiveness of the CEO and the organization over the last 10 or so years. Kim et al have been recognized for their outstanding fundraising abilities but part of the reason for that is to sustain the very high salaries and perks of those working at the CAA. An impressive organization would bring in an outside consultant and really assess Kim and the organization’s effectiveness. The reluctance do this of someone being paid $180K a year is quite shocking. If one wants to earn what is paid in the private sector than one should also be willing to be properly evaluated.

    At a top level I find the progress dismal. The disease is still not recognized by the medical profession, the criteria still is effectively a waste bin of various and sundry symptoms and there are no accepted treatments outside of CBT and GET.

    I also have been very disappointed in how Kim and the CAA has chosen to communicate this issue to the media. There have been a lot of “loose” statements like “we can’t go around poking people in the spines”. If the CAA is going to communicate to the press the only statement they should make is this is a very serious condition. Once they have learned that maybe other aspects can be discussed in the future.

    This leads me to the advocacy issue. Are they advocates or not? They have announced that they are only researchers but still seem to be advocating. What is their strategy here?

    I also disagree that it is the best way forward. If the CAA is only a research focused organization, I would argue that giving money to Dr. Enlander at Mt. Sinai or Dr. Jose Montoya at Stanford or others working at world class medical/research centers might be the better way to go.

    • Jennie Spotila says:

      Allow me to clarify what I meant by not rehashing old criticisms. I choose not to do so, but I completely agree that the Association’s Board and staff should think hard about the progress that has and has not been made. That is an essential piece of identifying what is needed in the new CEO. I am not involved in that search, but I hope that those who are will think about what has been accomplished and what is left to do.

      Kim was highly compensated, as someone with her knowledge, long tenure, and experience should be. She worked 80 to 90 hours a week the entire time I served on the Board (6 years) and took only a few weeks of vacation during that entire time. Her salary was held flat during the years I had access to that information, at least. Furthermore, she is in the top tier of lifetime donors to the Association. I’m sure that there will never be consensus among patients whether she deserved that salary, but I also note that there are other people in the ME/CFS non-profit world who made as much or more.

      In terms of what Kim and the Association have accomplished, here’s the first ten things that come to mind in no particular order: 1) Fund the Lights’ research on post-exercise gene expression which went on to secure substantial NIH funding; 2) Fund Shungu’s work on neuroimaging which went on to secure substantial NIH funding; 3) Fund the Biovista drug repurposing study which (as was reported at the FDA meeting last week) has identified a drug target and a proof of concept clinical trial is being planned; 4) Create the first national biobank and registry open to any qualified investigator; 5) Make the right call on XMRV, and educate all the policy makers who had no idea what CFS was and why it mattered; 6) Fund the largest and longest-running grassroots advocacy effort on the Hill through the Lobby Days and Virtual Lobby Days; 7) When Congressional oversight of the CDC program ended and it started to tank, the Association gathered the evidence to prove money was being wasted and made a loud call for new leadership; 8) Turned down the large no-bid contract renewal of the CDC’s provider education program because CDC was moving in the wrong direction (I’ll add that this significantly hurt the Association’s bottom line in the short term); 9) Created the first linked network of investigators in ME/CFS history; 10) First to require data sharing among funded investigators and secured the availability of CDC’s huge dataset; 11) Attracted the interest of Faster Cures and was accepted into the prestigious TRAIN program; 12) Competed (in cooperation with other organizations) for the $300,000 Senofi challenge and WON; 13) Funded Snell’s research on VO2max (before anyone realized how significant it was); 14) Offered the first (and only) webinar series to the patient community covering scientific and advocacy topics.

      Do we have a treatment or diagnostic test? No. Does every patient have access to expert ME/CFS care? No. But are we closer to those things? ABSOLUTELY. Pretend that list of 14 things never happened. Where would we be?

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