Becoming Visible: Advocacy and Awareness

There are several new ME/CFS awareness and advocacy efforts currently in place that I wanted to share with you.

First, Dominique at 4Walls and A View has just launched Invisible Awareness, a website to promote personal ME/CFS stories in the hopes of making our plight more visible. On the 12th of each month (in honor of May 12th Awareness Day), there will be a new article featuring someone's individual experience with ME/CFS and how it has affected his/her life. The goal is for everyone to then share the website on various social outlets so that it reaches more people. In this way, we will be helping to raise awareness "1 story at a time."

I am honored to have the first featured article on the website! You can find it by clicking on the image below.

Some of you will already recognize my story, but please do check it out and share it with others so that the website gets lots of visibility. Please also consider contributing your own personal story to be featured at a later date. For more information on the site's goals and mission, as well as on how to get involved, please contact/visit Dominique directly at 4 Walls and A View, or at the Invisible Awareness website.

There are also several other new advocacy efforts in place to help increase awareness and raise funds for ME/CFS research. One such effort is blogger Lee Lee's project Art for XMRV, a website where artists can contribute their work for sale, and others can purchase them in the form of note cards. All proceeds (100%) will go to the Whittemore Peterson Institute (WPI). Click below for more information, or to purchase some of the beautiful artwork already submitted! You can also join the community board on Facebook.

My friend and fellow blogger, Vikki, has also teamed together with others to create a fundraising effort for the Whittemore Peterson Institute called Count Me In. The goal is to get as many people as possible to pledge just $1 on the 20th of each month to the WPI. That's only $12 a year! It may not seem like much, but it adds up. The fundraising event raised over $600 on it's opening day last month. If interested, please see the link above, visit Vikki's blog, or join the effort on Facebook for monthly reminders.

Of course, you can always go directly to the Whittemore Peterson Institute website to donate as well.

Peggy Munson, author of the book Stricken: Voices from the Hidden Epidemic Chronic Fatigue Syndrome, has called patients to take action through her new advocacy effort called The Exit Project: Groundswell Campaign. To participate, you need only take a photo of yourself lying down with an X somewhere in the picture (X for XMRV and for being X'd out by illness). Then write a short blurb about how ME/CFS has grounded you and altered/changed your life. Submit the photo along with your story (it need not be long) to Peggy for inclusion on her website, then email it to various government officials so that they hear our plight. For more specific details and instructions, please click below to read Peggy's full description. The more people we have participating, the stronger our collective voice. (Note: you do NOT need to have been tested for XMRV to be included; anyone with ME/CFS is invited to submit a photo).

In other efforts, the ME/CFS Worldwide Patient Alliance is a new advocacy group formed in August 2010 in response to "a community-wide call for greater patient empowerment and influence." They placed the first ever ad about ME/CFS in the Washington Post this past December. Please visit their website to find out how you can get involved in their "Show 'em Your Mad - Fax the Ad!" campaign, as well as other upcoming advocacy efforts. You may also want to visit their newly launched Zazzle.com store to purchase some cool merchandise and help them raise funds.

Other ongoing awareness campaigns already mentioned on this site that you may want to visit include the Blue Ribbon Campaign and the Sock it to ME Campaign.

If you haven't already done so, you can also watch my new awareness video -- What is ME/CFS? -- and be sure to pass it on and spread the word.

As many of you know, there have been a lot of ongoing negative politics (to put it politely) at the CDC and NIH in terms of ME/CFS research in the last 25 years. These politics continue to cause delay of solid biophysical research, as well as the hope for viable treatments in the near future.

The history of the CDC's reaction to ME/CFS since the initial outbreak in the U.S. in the early 1980's has been, quite frankly, rather abominable. Dr. Elizabeth Unger, has recently been selected as the new head of the CDC CFS program, and thus far, she seems to be advocating for more of the same. Please consider signing a petition which urges the CDC to promptly change the direction of their CFS program toward more biophysical research.

Petitions by Change.org|Start a Petition »

[Update 2/13/11: Dr. Unger has responded to the petition. Please see PANDORA's announcement here. The petition will close on February 15th. Thank you to all who signed!]

Last October, the CFS Advisory Committee once again met to provide recommendations to the Secretary of Health on what directions to take in terms of both CFS research and strategic planning. A copy of those recommendations can be found here. If you agree with these recommendations, please take a moment to send a letter to the Secretary of Health, ask her to implement them and let her know we are awaiting her response. The letter is already written for you -- just fill in the blanks with the appropriate info. It only takes a couple seconds! Of course, if you prefer, you can also write your own letter instead.

From what I understand, there has been quite a bit of internal disagreement within the ME/CFS community on how and whether we as patients can unite and rally together for our cause (e.g., see Mindy Kitei's editorial "We Are Not Crumbs," and Marly Silverman's commentary Time to Make a Difference Together).

I have not been following the debate very closely, as I am too sick to be active on message boards or follow too many blogs. Perhaps I am therefore a bit naive. However, my own opinion on the matter is that those who are willing and able MUST find a way to unite.

Unity doesn't mean we have to always agree with each other. It doesn't mean we cannot offer constructive criticism or advice on what directions any organization may want to take to move forward. It means simply that we must agree on a common goal, and work towards that goal with mutual respect and some measure of solidarity.

I think we all want change. We want the WPI to get funded. We want more biophysical research, new direction at the CDC and NIH, increased awareness within the medical community and the public at large. We also want clinical trials, and research into treatment that propels us forward toward a cure.

Working together, we CAN make a difference and ignite change. I urge you to take as many actions above as possible. A lot of people have asked me what they can do to help, and these are just a few small things that can ultimately make a huge difference. It's time for our voices to be heard. It is only then that we can move forward towards better research, treatment and a cure.

Thank you!!

UPDATE 11/26/11:   Many things have changed since this post was originally published:

• The Invisible Awareness website has been changed to Becoming Visible 4ME
• Art for XMRV has changed its name to Art for ME. Proceeds will go toward an ME/CFS institute to be decided upon at a later date
• Count Me In has ended its campaign
• The Exit Project has ceased.