Sunday, September 13, 2009

Promising News from the CDC?

It seems that the Centers for Disease Control and Prevention (CDC) is paying more attention to the CFS community and advocates. On September 1, 2009, they posted the following message on their website:

Input on CDC CFS Strategic Research Plan

Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.

Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).

CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas.

To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here.

It's wonderful to feel as though my effort to give public testimony at the CDC in Georgia earlier this year was worth it.

Only time will tell if the CDC actually takes all the comments seriously and incorporates them into the Strategic Plan.

I'm crossing my fingers, but I won't hold my breath.

Today's Activities: out of town for work. Today's Most Annoying Symptoms: headache, muscle fatigue, drowsiness.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5


Jo said...

Wow! This seems like a result. Absolutely your contribution was worth it. And thanks for keeping us informed.

cinderkeys said...

Funny, the first thing that popped into my head when I read your headline was, I'm not holding my breath. For hope of progress and treatments and an eventual cure, I look more to organizations like Whittemore-Peterson.

If the CDC wants in on the real science action, that's great, since they're getting taxpayer money to do what they do. Still, I'm not going to get excited until I see real results from them.

alyson said...

Hi Jo and cinderkeys - Thanks for your comments! :)

cinderkeys, I'm not familiar with Whittemore-Peterson, so I'll be sure to google it after I finish this comment...

I agree with you. As I said in my post, I'm not holding my breath.