The NIH's website on NIH Funded CFS Research has a pathetic few number of research abstracts. The latest research listed is from 2006. The latest date reference on the other link addressing CFS Research is 2003. The latest "accomplishment" by the Trans-NIH Working Group for Research on Chronic Fatigue Syndrome (CFSWG) listed on the NIH's website is from 2004. The CDC's CFS website is only marginally better. The Research: New Knowledge & Publications website was last updated February 28, 2008.
We're halfway through 2009, right?!
There is a serious need for more research and focus on CFS. Agree? You can help make a difference! Here are a few things you can do to advocate for more research and awareness:
Use the CFIDS Association's Grassroots Action Center write to the media, public officials, and (currently) the CDC about CFS. The more we write to these people about CFS, the more those people will be forced to pay attention. Don't just send emails/letters this one time. Make it a habit. I send emails/letters through the system regularly. If you don't have the energy to write you own thoughts on the subject, don't worry! The main part of the letter is already written for you. Sending emails through the system is free. Sending a letter only costs you a postage stamp.
Donate money to the CFIDS Association (even if it's just a little). No, I do not work for them, but I do donate money to them every month. I'm part of the Chairman's Circle. The reason I donate is because they are one of the biggest advocates for people CFS. Their advocacy is unparalleled, and their voice is so big that they get heard. They also sponsor CFS research. The CFIDS Association is the reason I got involved in advocacy.
Write. Start a blog for all to see. Share your story. The blog system I am using to write this one is free through Blogger.com. I've sent my blog to family and friends. Some of them have forwarded my blog to their friends and family. The more people that learn about CFS and start to better understand the disease, the better.
Activities That Require the More Energy & Money
When the CFIDS Association holds its next Lobby Day, try to participate if you are physically and financially able. If you can't be there in person, be sure to take advantage of the virtual Lobby Day that takes place every year. My first Lobby Day in 2006 was one of the most empowering things I'd ever done. My second one in 2007 was no less empowering.
The next time the CFS Advisory Committee meets, tell your personal story if given the chance. This year I went in person to speak, but they also accepted testimony via telephone.