Advocacy, Awareness, Fundraising and... Socks

There's been a lot of concerning news and rumors circulating in the ME/CFS community in the last couple of weeks, leaving some, including myself, feeling a bit discouraged. One way to turn this feeling around is to participate in advocacy and fundraising efforts that will help ensure progress, increase awareness, and further biophysical research into this devastating disease. So, today I thought I'd share with you a few such efforts that are currently in place.

First, as discussed in my previous post, the publication of an NIH/FDA paper, which reportedly duplicated the October 2009 Science study finding the retrovirus XMRV in a large percentage of ME/CFS patients (as well as in a much smaller percentage of healthy controls), has been put on hold for further analysis. If you'd like to sign a petition urging government officials and the Department of Health and Human Services to ensure this paper is published, click here.

Please realize that this is not just a CFS issue. XMRV has also been linked to prostate cancer, and its full implications are not yet known. The FDA/NIH study allegedly estimated XMRV and other Murine Leukemia viruses to be within the blood donation supply at between 3% and 7%. As such, this data truly concerns everyone.

In terms of fundraising, Chase Community Giving (through Facebook) is donating a rather generous 5 million dollars to the 200 charities on its website that receive the most votes by its fans. The top charity will receive $250k, four runners-up will get $100k, and a whopping 195 other charities will be given $20k.

Currently in the top 200, PANDORA (Patient Alliance for Neuroendrocrineimmune Disorders Organization for Research & Advocacy) is in the running for this award. PANDORA has been working hard to create the first Neuroendrocrineimmune (NEI) Center on the east coast, similar to the Whittemore Peterson Institute. The center will focus on research, clinical support, diagnosis and treatment of multi-system illnesses and complex diseases such as ME/CFS, Fibromyalgia, Gulf War Syndrome and Lyme Disease. Recently, the New Jersey state legislature passed a unanimous resolution supporting their efforts.

To vote for PANDORA and help them obtain the much needed funds for this project to reach fulfillment, please click here (you need to have a Facebook account) and search for "Patient Alliance," or watch PANDORA's tutorial and follow their instructions. This is such an easy way for us to help raise funds for a well-deserved ME/CFS organization -- all it takes is one little click.

The rules don't allow you to vote for the same charity twice (unless you have a gift vote), but you can vote for up to 20 different charities. So while there, if you are up to it and feel so inclined, please vote for the many other wonderful ME/CFS, Lyme and other charities eligible for the award. (Note: The Whittemore Peterson Institute does not qualify for the competition due to a restriction on organizations with annual operating expenses exceeding $1,000,000).

Voting ends on Monday, July 12th, so please cast your vote soon!

PANDORA is also hoping to participate in the Pepsi Refresh Project sometime in the coming months. For more information, please view their new video. Once their project makes it in, further instructions on how to vote will be included. And, yes, that's me in the background in the upper right corner of the video! :)

There is also a new campaign to raise awareness called Sock it to ME/CFS. It is similar in concept to the AIDS Quilt. Here's their description from their website:

Take a Stand — In Your Stocking Feet

The suffering caused by ME/CFS is mostly invisible. You don’t see us when we’re at our worst: many people with ME/CFS are housebound or even bedridden by the disease. We live in our socks. Now we’re turning our socks into banners. We can’t march with a banner but our socks—and a few healthy friends—can march for us, to call attention to this disease and the urgent need for funding and action.

Join Us

Send in a sock to represent yourself if you have ME/CFS, or send one to represent someone you care about who has the disease. Each sock should be decorated to say something about the person it represents. Please see the Send Socks page for complete sock guidelines. Your sock or socks will be gathered into a long garland with others. Together they’ll be displayed at conferences, events, marches and parades to make ME/CFS more visible.

So, here's a photo of the socks I came up with for both myself and my fiance.



As you can see, sock decoration isn't exactly my forte.

In my defense (and clearly I need one), all I had were the socks and a permanent marker. So, really I didn't have much to work with, nor the energy to do anything elaborate. But I went with the idea that something is better than nothing, and I wanted to do what I could to participate.

I think Jim would have perhaps preferred I'd chosen a slightly more manly sock for his contribution, but I decided it'd be cute to make us a pair. I also used his full name (James vs. Jim) just because it fit in the blocks better. He's not normally all formal like that. :)

In case you can't read my scribbles at the bottom, I note that I've had ME/CFS since 1996 and am bedridden, and that Jim has had it since 1984 and is wheelchair-bound.

Anyway, as my photo indicates, the socks you create need not be anything fancy. Or even necessarily attractive. :) If I can do it, anyone can.

Please do be sure to fully read the directions first, however. I didn't, and so this is my second run at it. The socks need to be at least 16" in length from top to heel, or 10" if you are making one for a child.

So, if you have some old socks whose pair got lost somewhere in the black hole of your dryer... get them out, be creative, and sock it to ME/CFS.

For some other advocacy and related efforts, please visit the links below:

• Blue Ribbon Campaign for ME/CFS
• Grassroots Action Center -- Write to Congress
• Nominate ME/CFS for a cube grenade
• Petition Against the Empiric Definition of CFS (for more info on the empiric definition, please see my previous post)
• Petition asking the Secretary of Health to meet with PANDORA to fund the NEI Center
• Request for Congressional Action
• Solve CFS Biobank
  
• Worldwide Association for ME/CFS Awareness and Research (WAMCARE) auction
• Whittemore Peterson Institute

JULY 13th UPDATE: It was announced today that PANDORA made the top 200 in the Chase Community Giving challenge and will be the happy recipients of $20,000! Thanks to all who worked so hard to help make this happen, and to all who took the time to vote.