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Opportunity Knocked on May 28, 2009 - Will the ME/CFS Community Respond?

  [ 3 votes ]   [ Discuss This Article ]
By Craig Maupin • • June 8, 2009

Craig Maupin, editor of The CFS Report (, posted this challenge on June 6, with the note, “As always, feel free to copy anything to other sites and forums.” He includes a link to the CFSAC's recommendations for CDC research – directed to HHS Sec. Kathleen Sebelius - and a quick e-mail form you can use to add your support. Must be received by June 30.

Recognizing Opportunity: Will the CFS Community and Sebelius Respond?

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 that 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 to lead to an open door, 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, Secretary 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 Kathleen Sebelius a short, five minute exercise. Other groups have taken notice of the opportunity and 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 Secretary Sebelius.

The CFSAC recommendations as forwarded to Secretary Sebelius.

Easy Five Minute Form to write Secretary Sebelius:

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

Thank Dr. Wanda Jones for making CFSAC meetings accessible:

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