Thursday, June 4, 2009

The Need for Research, You Can Make a Difference

In reading through the CDC and NIH websites on CFS research, I realized that they're seriously out of date and not especially inspiring. This lack of attention and updates to the websites demonstrates to me that CFS is not a priority to the CDC and NIH. (The Swine Flu websites are updated almost daily.)

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:

Activities That Require Less Energy and Money

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 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.


Jozephine said...

I'm wondering why you don't think the possibility of psychological causes is less pertinent than other possible causes of CFS?

I agree that there needs to be more research and research across the board. But why is research into sexual abuse and CFS odious? Maybe it was the tone of the research that put you off?

Psychological trauma causes physiological changes. Survivors of sexual abuse are faced with denial of their experiences from all quarters. If there is a link between the abuse and subsequent CFS let's explore it. Why is it easier to research say Lyme disease than sexual abuse as a cause? We should be looking at everything.

alyson said...

Thanks for the question. I apologize if I upset you with my words. I do understand that psychological trauma causes physiological changes, and I certainly believe that more research needs to be done on the effects of abuse and trauma on people. The main reason I wrote last night's post was to point out the terrible lack attention to CFS being given by the CDC or NIH. My next point was that CFS research should focus on biological factors of the disease before considering other avenues because only then can treatments and possibly a cure be found. While I think it is important that we find what causes CFS (whether it's psychological trauma, Lyme disease, or anything else), I believe there is a greater urgency and need for treatments and a matter what the cause. In response to your comment, I have modified my original post to be less controversial in an effort to be more sensitive to future readers.

Jozephine said...

No, I wasn't upset, just needing clarification. And I think I understand what you are saying now - that in a way it doesn't matter what the cause is, we need to understand the mechanisms which are, by their nature, physiological/biological.

Thanks for your reply.

Shelli said...

I think another reason we shy away from wanting to pin CFS on psychological trauma is because we are tired of doctors telling us it's "all in our heads." If there is a psychological component, it is almost like validating their mistreatment. Still, I do think that trauma causes real biological changes in the body that can result in people being more susceptible to diseases like CFS.

PS -- glad I found your blog!