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.

Thursday, February 17, 2011

More on Steps Toward a Congressional Hearing

One of the best ways to build momentum for a Congressional hearing is to cultivate a relationship with your Representative and Senators, especially those on the committees listed in my earlier blog post.

Groups or individuals can do this by asking for a meeting at their Representative's or Senator's local in-state or district office. Try calling and asking for the staff person in charge of health for such a meeting.

Explain that you have a disease that was investigated by the CDC in the mid-1980s but that federal research into it has been derailed from the original cohort and subsequent pandemic.

Bring some information with you to the meeting that summarizes the situation but isn't overwhelming. Many members of Congress know little or nothing about our disease, or are misinformed. Start making them aware of the politics involved by handing out copies of something like Hillary Johnson's Op-Ed piece in the New York Times:

After the initial contact, it's very important to continue to call, email, and visit and provide more information.

The idea is to keep up a sustained campaign of engagement, even if it is simply a semi-monthly email to the health staffer.

For those who aren't able to get out, I'd suggest calling  and getting the name of Washington, DC legislative assistant in charge of health matters. Then keep in touch by email as outlined above.

Sunday, February 13, 2011

Steps Toward A Congressional Investigational Hearing

A number of advovates, including me, would like to see a Congressional Investigational Hearing (a type of "oversight" hearing) into the activites of federal agencies involved with ME/CFS.

This type of hearing acts much like a judicial hearing.   Information is gathered (by subpoena if necessary) and federal ageny officials must testify under oath.

In other words, it's  a great way of getting the accountability that has been lacking by some who have a great deal of power over our lives and health.   

Ideally, a professional lobbyist would do the legwork for this.   But sometimes all it takes to get the ball rolling is for one constituent to get the right member of Congress interested.

So, for anyone who wants to put their political power (yes, you do have power, you are a voting constituent!) to work, here are the Congressional Committees that are most likely to undertake such a hearing, with listings of members and their contact information.

Why not take a look and see if your Congressmember or Senator is on one of these lists?  If so, contact them and tell them what is (and is not) going on.

House Committee on Energy and Commerce
Subcommittee on Health

Senate Committee on Health, Education, Labor, and Pensions