The Transforming Faces of the CFIDS Association of America

The Transforming Faces of the CFIDS Association of America

by John Herd

In the early years of the CFIDS Association of America (CAA) the organization was a dynamic organization, doing its best to represent and help patients.

As Kim McCleary became more entrenched in the CAA, taking over increasingly more control of it, their [her] advocacy still began to change. Instead of acting as a diplomatic advocate trying to make advocacy headway with government officials and agencies, her actions and statement about health department activities and/or lack there of were becoming increasingly anemic.

Effective diplomacy is one thing, but increasingly respected advocates and informed patients were talking about McCleary being “in bed with the health department.”

At the same time it was becoming increasingly evident that (A) McCleary was not willing to work collaboratively with other CFS organizations or advocates, (B) that the CAA was no longer interested in providing any kind of services to aid or assist patients, and (C) that the CAA’s actions were all about what was economically best for the CAA, in McCleary’s mind.

McCleary was consolidating her power within the CAA and in the governmental CFS arena. She made a point of selecting various CAA board members who would accept her views about matters and back her up. So too was she making sure she had an inside track to health department committees and officials while doing nothing to assist other advocates, activists or patient organizations with advocacy initiatives. She was not what one would call a team player, unless of course the team one is referring to is the health department.

A high level health department official when speaking to a group about a CFS advocacy said, “When (_____) speaks (this person) speaks for the patients; when Kim speaks she speaks for her organization.” That clearly defines what McClearly has been about.

Due to personal matters the founder of the CAA, Marc Iverson, had less of a hand in running the organization. Additionally, McCleary had consolidated so much power on the organization’s board that Marc found he had diminished influence upon getting the organization back on track. Marc had his ideas about CFS advocacy and helping patients, McCleary had hers, and the differences were vast.

I can not reveal the details because they were shared in confidence, but the internal wrangling within the CAA got very ugly. Marc eventually composed a resignation letter and left the organization.

In 2004 Jon Sterling, who had become the CAA’s Chairman of the Board and several other people resigned for similar reasons. What lead up to that event seemed like a tactical carbon copy of the playbook used against Marc Iverson. Again the conflicts came down to doing what would most effectively be representing and acting on behalf of the CFS community or following McCleary’s strategies for building CAA’s sphere of influence with the health department.

McCleary’s style of impotent advocacy was taking a profoundly negative toll on the organization’s membership roster and donations to the organization. The organization’s excuse for declining membership was that much of the information it had once furnished was now available on the Internet. That excuse was nonsense; people did not feel the organization was adequately representing them.

The CAA had never made enough money from membership funds to run the organization, and clearly not enough to fund the large salary McCleary wanted for herself. She desperately needed a revenue stream and the answer was health department contracts.

For those of us in the CFS advocacy trenches that immediately reeked of conflict of interest and we said so. Given the CAA’s economic dependence on those contracts the CAA was not about to bite the hand that fed them. The messages coming from the CAA increasingly sounded as if the health department had written them. The CAA had become the CDC’s puppet.

When it became clear to McCleary that the CDC contracts were ending she needed to find a new revenue stream. Since the contracts were ending anyway she made the tactical decision to distance herself and the CAA from CDC with a series of critical statements about the CDC. Such distancing was important for her next metamorphic transformation of the CAA, that of becoming an administrative medical research network.

The CAA brought on board Suzanne Vernon from the CDC to act as their Scientific Director.

Having read the CAA’s “Research Grants Program, Request for Applications” and the CAA’s “Research Grants: Guidelines, Guidelines for Conducting CFS Research Studies” it was evident that McCleary and Vernon were trying to make the CAA an administrative medical research network.

Cort Johnson, the most outspoken, ardent supporter of the CAA immediately was highly critical of me when I publicly pointed this out. He said there was no evidence to support my analysis of what the CAA was doing.

When one CFS advocate not long ago referred to the CAA as being an advocacy organization to an NIH official, she reportedly was immediately corrected by the official that the CAA is not an advocacy organization, they are a research organization. The official most likely would not have stated that if that were not the way the CAA were portraying themselves.

It would not surprise me at all to see the CAA eventually applying for government funding directly, and if need be changing their incorporation type in order to do so.

So here we are today. The CAA was not only luke warm at best about the Whittemore Peterson Institute’s (WPI) XMRV findings, they have reportedly been very aggressively speaking and acting behind the scenes to blackball WPI from meetings, government committees and grant funding. The only logical conclusion one can draw from this is that the CAA views WPI as a research competitor. For this advocate, I have far more faith in the WPI and the medical network they have been forming than in the CAA and whatever directions they wish to steer CFS research.

I do not feel the CAA is adequately representing the bests interests of the CFS community as an advocacy organization or a research organization. The vast majority of those I speak to do not want the CAA to convey that that they are representing us when they are not doing so. While a small number of people have been critical of our speaking out about this, claiming we need the CAA because they are the only national organization, my position is that having no organization is better than one that is doing harm. If the CAA went under that may clear the way for patients to get behind creating the kind of advocacy organization we need and getting the kind of support and funding the WPI needs.

© John Herd, ’11
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About johnherd

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