Sunday, February 27, 2011

Let Government Agencies Know the CAA Does Not Speak for You

Petition–CAA Does Not Speak For ME

Several independent advocates have collaborated to produce a petition requesting that government agencies recognize the CAA is not our voice.   The petition is on and I urge you to sign it by going here.

The text of the petition:
Targeting: National Institutes of Health, Centers for Disease Control and Prevention, and Chronic Fatigue Syndrome Advisory Committee
The CFIDS Association of America has proven itself to be an inadequate representative of our illness.  The following petition is designed to be presented to the NIH, CDC, and CFSAC.  Our goal is to present it at the May 2011 CFSAC meeting.
Recognize that the CFIDS Association of America is not our voice.
We the undersigned are patients who have been told by our doctors that we have “Chronic Fatigue Syndrome”, advocates for our loved ones who have been diagnosed with “CFS”, and individuals who have otherwise suffered under the constraints of the label “CFS”.
As such, we ask that you honor our voice. Collectively, the undersigned DO NOT RECOGNIZE the CFIDS Association of America as being our representative agency, nor as being capable of advocating properly for our illness.
Over the last few decades, we have implored the CFIDS Association of America to advocate for the illness that was given the “Chronic Fatigue Syndrome” label by the Holmes Committee … the outbreak of what was most likely Myalgic Encephalomyelitis in Incline Village, Nevada.
Instead, the CFIDS Association of America has maintained a steady inclination towards advocating for the CDC’s version of a mythical cohort of chronically fatigued people. The CFIDS Association of America has failed repeatedly to portray our illness as the devastating entity that it is, choosing instead the middle road and collaboration with the false science that has been built around the many fatiguing illnesses that have been lumped together under the CDC’s “CFS” umbrella.
For years, CFIDS Association of America was a CDC contractor, accepting millions in funding and in return collaborating with the CDC in the effort to brand CFS as a fatiguing illness.
Development of the SPARKS awareness campaign in conjunction with the CDC produced a campaign that included elements such as the traveling photo exhibit depicting people who looked tired. There were no pictures of what this illness actually does. Other elements included banner ads directing people to the CDC website for further information, a press conference in conjunction with the CDC and promoting the CDC as a reliable source of information on CFS, and a patient brochure that focused heavily on cognitive behavior therapy.
In the March 2010 newsletter, CAA included an article by Alex Howard entitled “The Art Of Pacing”, in which we were told that patients did not understand what may be required for “recovery”, and that not pacing properly will slow down or hinder our recoveries. The article has since been replaced due to patient outcry.
Recent commentary by the CFIDS Association of America in response to the PACE Trial indicate that the CAA still sees CFS through the eyes of the CDC’s chimera of emotionally induced illness.
In the process, our voices have been lost. It has not been until the advent of social media that the sickest of us have been able to advocate for ourselves. But social media has interconnected us, and allowed us to watch as the CFIDS Association of America consistently fails to represent our needs.
Interaction with the CFIDS Association of America on social media has given us the opportunity to question the Association repeatedly. Their response to us has not been satisfactory. Their response to changing science has not been satisfactory. Their response to our requests to address the upcoming issues has not been satisfactory. Their responses to issues as they unfold in major news outlets has not been satisfactory.
We ask that you no longer rely on the CFIDS Association of America as “our voice”. We have our own voice, and it is not that of the CFIDS Association of America. With today’s technology, the vast patient population can be interacted with directly. We ask that you do so.


  1. Thank you for posting this, Liz.


    Patricia Carter

  2. Thank you, Liz! It's time for a change! Thanks for everything you do toward that end!