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Celebrating ME/CFS Awareness Day – In So Many Different Ways

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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.

‘My Brother By Choice’ – A Good-bye to Tom Hennessy – Fierce Advocate: Memorial Tomorrow

Participate with #MEAction 

#MEAction, as always, has a full list of things to do to celebrate ME/CFS, spread awareness and make a difference.

Attend #MEAction’s #Millions Missing Global Event at 12pm PT, 3 pm ET, 7pm GMT

Use #ME Actions Virtual Toolkit to share your story on FacebookTwitterInstagram, 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:

For years, my chronic illness kept me isolated. The pandemic helped me get closer to my community.

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!”

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


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.

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