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Recognizing Opportunity:  Will the CFS Community and Sebelius Respond?

 June 6, 2009

By Craig Maupin at http//www.cfidsreport.com

There is a popular saying, well-known around the world: “Opportunity knocks”. The saying is not descriptive of opportunity alone. Rather, the saying is describing the relationship between opportunity, and those who may, or may not, benefit from it.

In my 20 years of suffering from chronic fatigue syndrome, I have seen very few hopeful days. One such day was when former Assistant Secretary of Health and Human Services Donna Dean announced a chartered committee to give CFS a scientific, non-stigmatizing name. Dean believed that the name “chronic fatigue syndrome” was not only affecting public perceptions, but the perceptions of the scientific community as well. She was right.

Dean’s efforts hit resistance within the health department. Given the health department’s history, that resistance was expected. However, the CFS community’s response to Dean’s efforts at reform was, at times, mixed. Some CFS advocates recognized and responded to the opportunity for reform, a new direction. Others chose to observe. To this day, I believe Dean’s proposal, for whatever reason, became an opportunity lost.

On May 28, 2009, opportunity knocked once again. The CFS Advisory Committee – largely composed of scientists and clinicians -- requested the Secretary of Health and Human Services install a new director of the CFS program at the Centers for Disease Control and Prevention (CDC). These recommendations stem from scientists and clinicians that know chronic fatigue syndrome.

For a community that has seen so few victories, May 28th, 2009 was a day to remember. But, it was only a knock. For the knock lead to an open door, Dr. Kathleen Sebelius, will have to make the right call, hear the knock, and answer. She will have to decide if CFS, a predominantly women’s illness, needs a more collaborative hand at the CDC. Having watched this drama unfold, I believe that to find a collaborative hand for CFS at the CDC, Dr. Sebelius will have to rely on external advice and input, reaching outside the department.

The CFS community will also have to answer the knock, recognizing a rare opportunity before it passes.   The CFIDS Association has a form that makes sending input to Dr. Sebelius a short, five minute exercise. Other groups have risen to the challenge.   Timing is often everything.   If we truly care about how this illness that affects us, our children, or our families, the timing is right to invest a few, short minutes in advocacy.

For CFS to one day be quelled, the right doors will need to open. Doors do not open by themselves. Knocks have to be heard, noticed and answered. Let’s hope the knock of opportunity on May 28th will be heard and answered by the CFS community, and the doors of reform will be opened by Dr. Sebelius.

 

 

 

 

The CFSAC recommendations as forwarded to Dr. Sebelius. http://capwiz.com/cfids/attachments/1_Recommendations_052809.pdf

Easy Five Minute Form to write Dr. Sebelius:   http://capwiz.com/cfids/issues/alert/?alertid=13463086&type=CU

Thank Dr. Wanda Jones for making CFSAC meetings accessible:  http://capwiz.com/cfids/issues/alert/?alertid=13457976&type=CU

 

Optional form letter....

The Honorable Kathleen Sebelius
Secretary of Health and Human Services
200 Independence Ave., S.W.
Rm. 615
F
Washington, DC 20201

Request for the  implementation of CFSAC (CFS Advisory Committee) recommendations of 5/28/09

Dear Secretary Sebelius:

 The Department's CFS Advisory Committee met on May 2728, 2009 and unanimously passed a set of three recommendations. My hope is that you will work to implement those recommendations as soon as possible.

I have suffered from CFS (Chronic Fatigue Syndrome) for over xx years. It has stolen my ability to work, have a family, and enjoy a normal life.


    Like many who suffer from CFS, I believe we need new leadership of the CFS program at the Centers for Disease Control and Prevention. People who suffer from CFS want the program to be successful.  However, to achieve success, the program needs someone leadership that  who has shown that they can work with external investigators and clinicians, achieving their respect and support.

CFS is a predominantly women's illness.  My hope is that you will give all three recommendations your attention and place the CFS program at the CDC on a better, more stable, path.

    Sincerely,

Your name....