Advocacy Alert: Last Day to Vote for Chase Giving

Help the CFIDS Association and Whittemore Peterson Institute win money from Chase Bank! Today is the last day to vote for your favorite charities. The contest ends in a few hours at 11:59pm Eastern. We are in round two of the contest. All the organizations participating in round two were awarded $25,000 in round one.

What's Happening Now (from the Chase Giving facebook page)

There’s another $2.5 million in donations on the line – and your votes could be the deciding factor! The time is now, so check out the Top 100 charities, explore their Big Ideas, and vote for the ones you think would do something amazing with $500,000.

How To Vote (some instructions from the CFIDS Association email)

First, log into your facebook account. You must have a facebook account to do this.  

Next, "Like" Chase Giving Community (http://www.facebook.com/ChaseCommunityGiving ). You should see the Like button in the left column.

Then go to http://apps.facebook.com/chasecommunitygiving/?ref=ts (yes, that's the correct web address) and search for "CFIDS Association" and cast your vote by clicking the "Vote" button. (You have to "allow" Chase Giving to access your account info in order for your vote to count. This enables them to keep track of the voting under the "one vote per charity" rule.) Next search for "Whittemore Peterson" and vote.

While you're at it, vote for the The National Marfan Foundation. According to the CFIDS Association, their organization is encouraging its supporters to vote for the CFIDS Association and WPI.

Happy voting!

Video: What Would You Do?

The CFIDS Association of America created this moving video using responses from 1,784 CFS patients to the question: "What would you do if you were completely well tomorrow?"

The CFIDS Association has also created a new website called Solve CFS, as part of a campaign to raise $5 million for research by the end of 2010. If you look closely at the website's banner, you'll see Kenny's and my photos. :)

Today's Activities: traveling for work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, nausea, probable low-grade fever, itching.

Mood (10 is best): 6
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

Advocacy Alert: Federal Research Public Access Act

This just in from the CFIDS Association Grassroots Action Center Listserv:

Help free the data!
Voice your support for open access to research

Ask your Senators to co-sponsor FRPAA (S. 1373)

Take Action!

On June 25, Senators Lieberman (I-CT) and Cornyn (R-TX) introduced the Federal Research Public Access Act (S.1373), a bill that would ensure free, timely, online access to the published results of research funded by eleven U.S. federal agencies. S.1373 would require those agencies with annual extramural research budgets of $100 million or more, including the Centers for Disease Control & Prevention (CDC), to provide the public with online access to research manuscripts stemming from such funding no later than six months after publication in a peer-reviewed journal.

The bill specifically covers unclassified research funded by agencies including: Department of Agriculture, Department of Commerce, Department of Defense, Department of Education, Department of Energy, Department of Health and Human Services, Department of Homeland Security, Department of Transportation, Environmental Protection Agency, National Aeronautics and Space Administration,
and the National Science Foundation.

S. 1373 reflects the growing trend among funding agencies - and college and university campuses - to leverage their investment in the conduct of research by maximizing the dissemination of results. It follows the successful path forged by the NIH's Public Access Policy, as well as by private funders like the Wellcome Trust, and universities such as Harvard and MIT.

Detailed information about the Federal Research Public Access Act is available at http://www.taxpayeraccess.org/frpaa. This is one step toward gaining greater public access to original data funded with taxpayer funds, data such as CDC has accumulated for 25 years on chronic fatigue syndrome.

All supporters of public access - patient advocates, consumers, universities and colleges, researchers, libraries, campus administrators, publishers, and others - are asked to ACT NOW to support this bill.

This information is provided by the Alliance for Taxpayer Access, of which the CFIDS Association of America is a member.

Take action now! It's really easy to do and doesn't take much time. It took me less than a minute to fill out and submit.

Time Sensitive: CFIDS Advocacy

The CFIDS Association of America just sent out the following action alert. Please take action if you are able.

We need your help TODAY
ACT NOW ON CDC RESEARCH PLAN

Take Action!
Tell planners that the status quo isn't good enough

For nearly two years, the CFIDS Association of America has been working to effect a more robust research effort at CDC. In spite of these diligent ongoing efforts, the past two years of dialogue and public testimony has produced a 5-year draft plan from CDC that is substantially the same as what CDC has been reporting since 2006. Status quo. Groundhog day. Déjà vu. All over again.

In response to CDC's request for input on its draft plan (posted at http://www.cdc.gov/cfs/meetings/2009_04.htm), the CFIDS Association has prepared a detailed response, making both criticisms and recommendations for how one-half of the nation's investment in CFS research will be spent through 2013. Our letter is posted at http://www.cfids.org/temp/research-plan-response.pdf for your review. We have used many of CDC's public reports to document the lack of progress and failure of the program's leadership to meaningfully advance practice and prevention to improve patients' lives.

To shift the dialogue and demonstrate a more united front of the research, clinical and patient support communities against the status quo, we invite you to "endorse" our letter by sending your own message of support to CDC at CFSResearchPlan@cdc.gov or by responding to this Action Alert!

The deadline for comments is Tuesday, June 30. CDC has committed to keep its e-mail address functioning after this date, so even if you can't act before June 30, please do so as soon as possible. Share this message with friends and family and ask them to do the same.

$20 million spent over the next five years is hardly sufficient to address the public health challenges that CFS presents, but it's too much money to waste on a weak, ineffective CDC research plan.

K. Kimberly McCleary
President & CEO

Take Action! It's easy to do and takes less than a minute. You can make a difference!

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.