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The CFIDS Association of America, Inc.
April 24, 2011

Doing good research but they have a terrible history on advocacy, seem very confused about who it is that they are attempting to advocate for (all people diagnosed with "CFS" using any diagnostic criteria or a focus on those who are sickest ME patients and who, ironically would never be allowed into a CDC study - or the CAA's own Biobank - as they are "too sick").

This issue of focus is critical and it has been neglected for over a decade by CEO, Kim McCleary. She is wildly overpaid for someone who is repeatedly having to apologize to the patient community for her confusing public statements (the CAA can write a decent letter of explanation after having pondered a topic for a few weeks but their statements to the media about "breaking research"(eg. the Pace trial) have been both disastrous (creating a situation where CFS is actually less well understood by patients, friends, family, clinicians and researchers) and illuminating with regards to the failure of leadership and a clear mission at the CAA ).

Supposedly the CAA is now no longer a patient advocacy group but they will still need to deal with the question of who they are trying to represent. This is crucial in order to focus their research efforts on a well defined patient cohort. I'm very skeptical the present leadership of the CAA has the skills to accomplish this or the insight to admit this critical short coming. I guess we'll see.

The Great!

I've personally experienced the results of this organization in...

I enrolled in the CAA's Biobank. Completed initial screening forms and then there was no follow up (I later learned that other patients were contacted and had blood drawn). No explanation from the CAA as to why I was not included or that the blood collection had taken place. Was I excluded because I was too sick (consistent with the ironic CDC guidelines that have been so widely discredited)? I could ask but in the overall scheme, I lost too much faith in this organization to care.

Ways to make it better...

If I had to make changes to this organization, I would...

I would replace the CEO and revisit the mission and who the CAA is trying to serve. They also need to engage the patient community. Right now they have retreated to their "bunkers" because of strong criticism from those they purport to represent. rather taking stock and asking why the strong reaction from those they are trying to help.

MY ROLE:
Client Served & I have a professional health research background, volunteering with a couple groups to help them with technical issues surrounding study participant identification.

Review from Guidestar