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

An Astounding One Month

I started this blog one month ago on May 28, 2009.

After giving personal testimony at the CDC in Atlanta, Georgia in April and at the CFS Advisory Committee at the Department of Health and Human Services in Washington, DC in May, I had the desire to start a blog to share my life -- the good, the bad, and the ugly -- so that more people could better understand CFIDS and living with chronic illness, in general. My main hope was that my family and friends would read my blog.

Never in my wildest dreams did I expect that in one month there would be over 1,000 hits to my blog from the all over the United States and the world, including Canada, Australia, Europe, and Asia. (Now I'm just waiting for South America, Africa, and Antarctica so that all seven continents are covered!)

I also did not anticipate that I would write as frequently as I do; however, the comments posted on my blog from others have inspired me to keep writing. This blog has given me a vehicle to reach more people than I ever imagined, and I'm going to keep writing as long as one person keeps reading.

Fighting for CFIDS awareness has given me a sense of empowerment. Blogging, writing to members of the government and media, going to Capitol Hill to lobby, and giving public testimony help me feel that my being sick all the time is not without meaning. I have a purpose and want to speak up especially for those with the disease who are too weak or ill to speak.

I am trying to make a difference.

Please feel free to share my blog with others. Thank you for reading!

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 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.

My First Blog Post

I live a double life. By day I work full-time at a great job and appear young and healthy. By night I am someone who suffers from chronic illness, has trouble walking up a flight of stairs, and is usually too tired to do anything other than watch TV and go to bed. I know I am one of the "lucky" ones with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) because I am able to work...though I haven't always been this functional.

I have been sick with CFIDS (also called Chronic Fatigue Syndrome) for my entire adult life. My health started to deteriorate slowly when I was 18 and got much worse from 22 to 24. When I was at my sickest, at ages 24 to 26, I was pretty much housebound. I slept 16 to 20 hours a day and could not hold a full time job. I had constant sore throats and low-grade fevers, caught everyone's cold/flu/bacterial infections regularly, was exhausted all the time and felt even worse after exercising, and just could not live a normal life. I'll talk about all my symptoms and health problems in greater detail in future posts.

Now that I am better off (though far from being completely well) I do what I can to be an advocate for all the CFS patients who are still too sick to leave their homes. For the past few years I have participated in the CFIDS Association's Lobby Days, which involved traveling to Capitol Hill in Washington, DC to meet with senators and congressmen and/or their health liaisons.

In April 2009 my husband and I traveled to the Centers for Disease Control and Prevention (CDC) in Atlanta, GA to give public testimony and comment on the CDC's 5-year strategic research plan proposal. Most recently (this week, in fact), I traveled to Washington, DC to speak at the CFS Advisory Committee's meeting at the Department of Health and Human Services (DHHS).

I've included my (slightly edited) comments from yesterday's meeting below (each person was given a maximum of five minutes to speak):

Thank you for having me.

My name is Alyson, and I flew in to be here. I am also happy to have my parents and cousin here to support me.

I am a CFS advocate and patient, and I do what I can to give a face and voice to the many CFS patients who are too ill to leave their homes. I'm 30 years old and have had CFS for my entire adult life; though I've only been officially diagnosed since 2005 because it took more than four years and four doctors to finally get diagnosed.

My original plan for today was to come and sit in on the entire advisory committee meeting, but my plans were foiled by my disease. This morning I woke up, ate breakfast, then took a five hour nap. My disease is a great frustration. This weekend my husband and I celebrated our fourth anniversary at Disneyland. The ONLY reason I survived the weekend is because my husband pushed me around in a wheelchair. I'm not going to explain how this disease has affected my marriage or quality of life right now because it will take more than five minutes.

I am here today to give you a sense of urgency. Not enough progress has been made in the education of physicians and other health care workers. The doctors I went to before finding my current one were skeptical at best and completely dismissive at worst when I proposed the possibility of my having CFS.

More needs to be done more quickly on all fronts -- educating health care professionals and the public, research on the disease including diagnosis and treatment. I've already lost my 20's; I don't want to lose my 30's. Please use your power and influence to help us move forward.

Thank you.

I'm too tired to write anything more, but I plan to write again soon (probably tomorrow)! Thanks for reading.