On May 12th, individuals around the globe will be celebrating International ME/CFS and Fibromyalgia Awareness Day and 2017 marks the 25th anniversary. The May 12th date was chosen because it is Florence Nightingale’s birthday and she was believed to have suffered from ME/CFS. Every year a number of events are held to celebrate and highlight May 12th Awareness Day for ME/CFS and FM, kicking off on May 12th and continuing throughout the month of May.
How will you participate this year? We have a host of suggestion for you to pick and choose from in order to make the most of this opportunity for all those with Myalgic Encephalomyeleitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromylagia (FM).
At the Bateman Horne Center, we want to focus our awareness efforts on elevating the voice of ME/CFS and FM in the medical community, because we won’t rest until all ME/CFS and FM patients receive first-class care delivered with compassion and integrity.
Thousands, perhaps millions of patients with ME/CFS and FM lack access to qualified and compassionate diagnosis, much less the first-class care they deserve. There is a misconceptions that we lack the clinical findings for ME/CFS and FM. We have the tools to make diagnosis more precise; every medical provider must simply learn to use them. Once they do, the illness will appear before their eyes.
There are many credible resources you can share with your healthcare provider team to advance their understanding of these complex medical issues. Use the May 12th Awareness Day/Awareness Month as an opening to share these and other resources with your healthcare team, area heathcare professionals and more:
- Institute of Medicine’s landmark report and accompanying physicians guide Report Guide for Clinicians, Beyond ME/CFS Redefining an Illness
- BHC guide on utilizing the NASA Lean Test Protocol as a simple way to assess orthostatic intolerance
- Information on Trans-NIH ME/CFS Working Group, which identifies shared areas of interest and challenges to advance ME/CFS research by providing evidence-based rationales for supporting ME/CFS research and attracting investigators to study this complex illness.
- FDA Voice of the Patient Document on ME/CFS which summarizes perspectives from patients concerning their ME/CFS, its impact on their daily life, and currently available therapies.
- FDA Voice of the Patient Document on Fibromyalgia which summarizes perspectives from patients concerning their Fibromyalgia, its impact on their daily life, and currently available therapies.
- NIH Director’s Blog article, Moving Toward Answers in ME/CFS
Use this template to get your correspondence started – May12_Contact Your Dr Template
Other ways to participate:
- Participate in the Sock it to ME/CFS & FM Challenge! Beginning on May 12th and throughout May, wear your wild and wacky socks for ME/CFS and FM! When someone asks about them, it’s your opening to tell them about your connection to ME/CFS and FM, about the work of BHC, your dreams for our future.
- Wear the wildest and wackiest pair of socks you can find – to work, the grocery store, a meeting, the gym, church. Roll that pant leg up – don’t be shy!
- Shoot a brief video or take a picture of yourself out and about in your wild socks
- Challenge no less than 5 of your friends to do the same AND to make a donation to the Bateman Horne Center to advance understanding and treatment of ME/CFS!
- $5 if they take the challenge; $50 if they don’t
- Tell them why it is important to you and share a bit about ME/CFS
- Share your video/picture on social media with the hashtag #SockItToMECFS #SockItToFM and/or #SockItToMECFSandFM as well as #BatemanHorneCenter
- Be sure to include the donate link in your posts: BatemanHorneCenter.org/sock-challenge-donation/
- Be a social media ambassador! “Like” the BHC Facebook page, follow us on Twitter, and Instagram then share our posts throughout the month, noting how it relates to you and that it is a part of the awareness effort
– Change your Facebook cover and profile photo May 12 through 31 to the ones we’ve created or create your own related to ME/CFS and FM Awareness
– Share the awareness images we’ve created and basic facts about the illness in your social media posts this month, sharing a bit of your personal story every time you post
– Access free graphics and images HERE
- Write to your representative letting them know of the seriousness of ME/CFS and FM and urging them to protect and increase funding for research
– Reference the IOM Report (HERE), the recommendations from CFSAC (HERE), and urge them to strongly support any efforts to increase funding for research
– Find your representatives at house.gov/representatives/find/
– Use the email/letter template to get started – May12_Contact Your Representative Template
- Get creative! Do you blog? Write a blog post about ME/CFS and FM, and how it has affected your life. Share it on your blog, your social media accounts, etc. Create a short video – 2 minute or less – about ME/CFS and FM, how your life has been affected, and share on YouTube and other social media. Then share what you’ve created with us at PatientVoice@BatemanHorneCenter.org and we will circulate it as well.
Each of us on our own can’t do it all, but when we work together we can move mountains. However you participate, may your energy and actions remind you and those around you that ME/CFS and FM have a voice, that those with ME/CFS and FM have tremendous worth and should be cared for with compassion, integrity and respect.