Reprinted with the kind permission of Cort Johnson and Health Rising
Editor’s Note: ME/CFS Awareness Day was May 12, so several of the events noted here have already happened. However, ME/CFS patients need our help every day to raise awareness, so please check out Cort’s recommendations.
Tom Hennessy and International Advocacy/Awareness Day
Tom Hennessy created International ME/CFS/FM Advocacy day over 30 years ago. A fierce and creative fighter, Tom’s advocacy career was unfortunately curtailed by a tremendously difficult case of ME/CFS. To this day I wonder how much further we would have been along if only Tom had remained healthier. Tom died in 2013. Read a tribute to him on the day he started.
Participate with #MEAction
#MEAction, as always, has a full list of things to do to celebrate ME/CFS, spread awareness and make a difference.
Use #ME Actions Virtual Toolkit to share your story on Facebook, Twitter, Instagram, or YouTube – with the hashtag #MillionsMissing. Tag #MEAction: @MEActnet so that #MEAction can re-share your stories.
Take Action – #MEAction has a full list of actions you can take to make a difference.
Participate in the Bateman Horne Center’s Hour of Hope
- Welcome and ME/CFS and FM Status Update
- Poem reading: “Sometimes Fibromyalgia Feels Like”
- Moderated Discussion with Drs. Bateman, Yellman, and Vernon
- Messages of Hope Video
- Live Interactive Messages of Hope (Bring Your Sign and Shoes!)
- Message to the Community
- Believing the Patient/Loved One, by Meredith Mehner
- Poem reading: “It Takes Courage”
- BHC’s Messages of Hope to You
Check out Rivka Solomon’s “Brief But Spectacular Take”
Rivka’s Brief But Spectacular Take on ME/CFS has been picked up by major media outlets.
Rivka followed that up with a moving editorial in the Washington Post:
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Check out Whitney Dafoe’s Stuff
You could very fruitfully spend Awareness Day by simply checking out what Whitney Dafoe has done since his re-emergence after taking Abilify. He has been on a tear, writing trenchant Facebook posts, creating inspiring protest playlists, and telling his story in intimate fashion in a published journal. Plus, check out Tracie White’s book on Ron Davis’s search for a cure for Whitney – see below.
- Facebook Posts– the overriding theme is to come together and support each other. Check out his trenchant and provocative posts including: What to call ME/CFS (April 12th), The Naked Self (March 31st), New Romantic Adventures (March 11th, March 25th) and others.
- Extremely Severe ME/CFS—A Personal Account (mdpi.com) – Whitney’s intimate, and I think important, portrayal of the experience of being severely ill, published in a medical journal.
Check out Whitney’s Story: Invisible Illness – Stories of Chronic Fatigue Syndrome – YouTube
Whitney’s ME/CFS Protest Playlist! – is “meant to take you on a journey from suffering, to protest, to resolve. Enjoy and get fired up!”
- Spotify – https://open.spotify.com/playlist/1YvjpVT2x9W4RVGGTPMIcG…
- Tidal – https://tidal.com/…/d0e0702a-fb42-4674-a254-9c002946831d
- Qobuz – http://open.qobuz.com/playlist/6204323
- YouTube Music – https://music.youtube.com/playlist
Check out Tom Kindlon’s Facebook Page
Tom Kindlon’s Facebook page provides a gusher of information on all things ME/CFS. Keep up with what’s happening (if you can) by following Tom’s Facebook page.
Tom’s recommendation for a video to watch: C.F.S//M.E. – The Torturous Disease
Make History- Participate in the Largest Genetic Study of ME/CFS Ever – the UK’s DeCode ME
It’s massive. It’s what we need. All it needs to be successful is you. For UK residents – Get Involved – DecodeME
Check out Inga’s Existence Project – A Stop Motion Animation Film
Read a Book
- The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son – Tracie White provides an intimate look at Ron Davis’s efforts to cure ME/CFS. Get close-up looks at Ron, Janet Dafoe, his wife, and Whitney. Check out a story in People magazine here.
- When Force Meets Fate: A Mission to Solve an Invisible Illness– Jamison Hill’s gripping story of his journey from fitness trainer and bodybuilder to being severely ill with ME/CFS.
- Sick and Tired: An Intimate History of Fatigue – as Emily Abel, a UCLA medical historian with ME/CFS, explores her own situation, she provides a cultural, social, political, economic, medical, business, gender, and labor history of fatigue as well.
- The Airstream that Ran Away with the Spoon: Discovering a new home and a new life with chronic fatigue – Despite her debilitating fatigue, Mary sold her home, bought an RV and hit the road.
- Sick eBook: Doherty, Glenn: Amazon.co.uk: Kindle Store– get a free “comedic novella” about a London ME patient’s efforts to get well any way he can.
- A Still Life– read Jennie Spotila’s review of “A Still Life” – a widely acclaimed memoir of a person with ME/CFS/POTS.
- Love and Fatigue in America, an oldie but a goodie. British journalist Roger King explores America while having ME/CFS.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.