Wednesday, May 03, 2017

Advocacy Efforts for ME/CFS Awareness Week - Join In!

Next week is the annual ME/CFS International Awareness Day on May 12, and an entire week's worth of advocacy efforts are planned - things that you can participate in in-person or from home. With the proposed slashing of the NIH budget here in the U.S., these efforts are even more important than they usually are - if you think patients with ME/CFS have been ignored by NIH in the past, just wait until the overall NIH budget is cut drastically! It is absolutely essential that we make ourselves heard, especially to our elected officials, both locally and nationally.

Here are some general ideas that  anyone anywhere in the world can do for Awareness Day. I usually add a blue ribbon to my social media profile pic during awareness week and post a brief overview of ME/CFS on my Facebook page for my non-ME/CFS friends and family on awareness day (you can see last year's message here). As usual, I will also post here on my blog, too.

Here in the U.S., there are some exciting events going on all over the country, and the most important of these is a lobbying effort to contact our elected officials. Solve ME/CFS Initiative has partnered with #MEAction to coordinate events for awareness week. This page includes all the details you'll need for awareness week, including timing, links to resources, online training sessions, downloadable documents for you to share with elected officials, and much more. Note that this page also includes sections on what you can do from home, online and by phone.

Much of the actions outlined on that page detail a huge lobbying effort nationwide, with patients and their families and friends reaching out to elected officials to explain what ME/CFS is and why funding is so desperately needed. Again, all the materials and training you need are available on that page, so it doesn't matter if you've never done this before - they are making it easy to get involved. You - or family member or friend - can plan to meet with your representatives in Washington, DC, or locally, but it's important to jump in and make plans NOW.

My family - all four of us - did this six years ago - we participated in a Lobby Day in DC, planned to coincide with a CFSAC meeting. My husband, two sons, and I visited two of our Congressional representatives in Washington and told them all about ME/CFS. At the time, both of my sons and I were all sick with ME/CFS, so our story was one that caught their attention. Every story is important, and it is critical to let our voices be heard, especially now. #MEAction also says that if you or your loved ones are unable to participate in lobby day activities yourself, you can donate to help others speak for you. Even if you are only able to donate $5 or even $1, if we all pitch in, we can have an impact!

Remember that if you are unable to travel to Washington, DC, there are still many ways that you can participate. For lobby day, you can:
All of these options are spelled out on the information page.

In addition, next week, you can do many things to help build awareness without leaving your home or even your bed:
  • E-mail, message, or post on Facebook to your friends and family, to inform them of what ME/CFS is, how it has affected you, and how they can help. 
  • Like the ME/CFS Awareness Day Facebook page for more ideas and up-to-date info.
  • Share information about ME/CFS on social media.
  • Join the #MEAction #BelieveME campaign and share your photo.
So, start planning now (if you want to meet with representatives, you really have to get planning immediately) and think about how YOU will help to build awareness next week! Look for more here next week.

What have you done in the past for ME/CFS Awareness Day? What do you plan to do next week? I'd love to hear your ideas!

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