International ME/CFS and Fibromyalgia Awareness Day is May 12. This date was chosen because it is the birthday of Florence Nightingale, the famous Army nurse that founded the world’s first school of nursing. Nightingale was believed to have suffered from ME/CFS which left her bedridden the last 50 years of her life.
To this day, I still can’t believe my IT career was halted because of ME/CFS and Fibro. When I resigned from my job, some assumed there was more to my departure than my health because I didn’t look (that) sick. Who doesn’t love a good office story? I didn’t have one. The push and crash cycles eventually became too much and my body couldn’t do it any longer.
Some debilitating illnesses aren’t visible. Is there a standard for what sick looks like?
Like other invisible illnesses, ME/CFS and Fibromyalgia are often misunderstood. We must continue to raise public awareness. We must continue to advocate for more funding, research, and medical education. Some progress has happened but there is more work to be done. Bottom line, we need to find cures for these devastating diseases.
There are many ME/CFS and Fibromyalgia awareness and advocacy events scheduled for May 12-15. This is where (we) patients need the help of our healthy friends and family.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
MEAction is sponsoring the #MillionsMissing protest on May 12 to target NIH and Congress for increased funding. Based on a report detailing the disease burden of ME/CFS – meaning the number of people affected and the effect of the disease on their lives – the annual research budget for ME/CFS should be a minimum of $250 million per year. Distribute this Leaflet to others.
Check out the #MillionsMissing map to find an event near you. To get involved in other ways, check out this page. (from the #MEAction website)
Got 2 minutes – Sign MEAction’s NIH Petition to fund ME Research.
Solve ME/CFS will host Advocacy Day on Capitol Hill on Tuesday, May 15. Up to 2.5 million people in the United States suffer from ME/CFS, yet our federal government only spends $5 per patient on research. It’s time to make our voices heard on Capitol Hill and demand that ME/CFS get its fair share of federal funding for research. Consider a donation to:
- enable advocates to meet with their congressional representatives and get our voices heard
- provide much-needed advocacy training and resources for volunteers who help keep this fight alive
- host a “base camp” on Capitol Hill for patients to rest during the day and receive refreshments (from the Solve ME/CFS website)
The National Fibromyalgia and Chronic Pain Association is hosting a (virtual) Together Walk Day on May 12 to raise money for fibromyalgia and pain research. Here’s more info about their events.
They are also posting countdown motivational messages on Facebook using “You are a Fibromyalgia Hero because…” See recent posts below. Who doesn’t like a bit of affirmation each morning?
Day 8: You are a FIBROMYALGIA HERO because… you compassionately encourage others.
Day 9: You are a FIBROMYALGIA HERO because… you find your hidden strength.
Day 10: You are a FIBROMYALGIA HERO because… you appreciate the support of those around you; friends, family, healthcare providers or fellow FM Hero.
The National Fibromyalgia Association – at the time of this posting, I couldn’t find any current events on their website but wanted to include them here anyway.
Social Media Hashtags for International ME/CFS and FM Day on May 12 (& beyond):
knowfibro #FMHero #IWalk4fibro (virtually) #NFCPA #fibrowarriors #fibromyalgia #spoonies
MEAction #CanYouSeeMENow #MECFS #MillionsMissing #PwME (patient with ME) #spoonies
sample post #1: My friend Sandra is a #fibrowarrior and #pwme. I join her in the fight for a cure. #CanYouSeeMENow #KnowFibro #MECFS #Fibromyalgia
sample post #2: Today is Intl #MECFS and #Fibromyalgia Awareness Day. #Fibrowarriors and #PwME refuse to quit. Fund research now! #CanYouSeeMENow #KnowFibro
sample post #3: ME is a devastating neuro-immune disease that leaves 1 in 4 people confined to their homes or beds. Despite its severity, this disease has been underfunded for decades. #CanYouSeeMENow #MECFS
Please take a few minutes on May 12 to raise awareness for ME/CFS and Fibromyalgia. We need your help.
Be kind and professional in all that you do and press toward the mark.
Gentle hugs to you all.