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
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 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 you can take to make a difference.
Participate in the Bateman Horne Center’s Hour of Hope (11 am MDT)
- 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:
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
Cort, that video on ME and it being a torturous disease, is sure a tear jerk example of what we all have to LIVE. And we do all need ((((((((BIG HUGS)))))))))!!!!! I love that it was put in there. I’m a definite Hugger. Sometimes there are no words, but a Hug can tell volumes.
Thanks for including that one. It sure is NO laughing matter.
Thanks!
I’m so glad you start with the reminder about Tom Hennessy’s role in this day – all these years later his work continues – that’s a large catalogue of activities to mark the day!
And I have always remembered your moving 2013 tribute to him when he died.
Thanks – Tom was a visionary – he thought of advocacy/awareness day as a day for ME/CFS, FM and allied diseases and he tried to enlist other diseases to join us. Unfortunately he failed and then got sick in ways I don’t even like to think about.
When he was at least somewhat well he was a powerful figure – a mover and shaker. We haven’t had anyone like him since.
He became too ill to carry that on. What a shame that was for all of us.
More than just about anyone Tom exemplifies for me just how costly this disease can be – and the losses it produces when it takes people out of life.
Celebrating……there is just so much that s ema wrong about that word in relation to cfs me and other long— Xxx-er diseases.
Good to have awareness brought to suffering.
But the word celebrating…….
I was reading an article and started substituting the word cfs/ me where it says cancer. Just to see how it might sound.
I am quickly overwhelmed. Just that simple action showed how far ahead in help so many other diseases are, and how far behind is cfs /me / long Xxx- er diseases.
This is the article:
“ The Risk of Suicide in Cancer Patients
Prevention and resources
By Lynne Eldridge, MD”
found at link:
https://www.verywellhealth.com/the-risk-of-suicide-in-cancer-patients-2248817
Then, reading patients’ experinces in the following article titled:
“ICU survivors at higher risk of suicide, research finds; implications for COVID-19”
found at the following link:
https://www.google.ca/amp/s/beta.ctvnews.ca/national/coronavirus/2021/5/5/1_5415814.html
Made me incredibly sad. And grateful.
Sad so much that there has been the equivalent of someone … err…. ‘spitting’ in a bucket —for help for cfs / me patients.
And grateful that in loneliness disability and disbelief so many more cfs / me affected people are hanging on
and NOT LETTING the …… err…..
buzzards who are with-holding $ , help , and benefits win.
Thank you for holding on and doing it one day, one moment, in time.
And grateful to the slow slow building surge of doctors, advocates, and FRIENDS who are believing and doing what they can to help cfs / me disease-riddled patients.
edit …*seems* wrong
Thanks – Sunie I know what you mean. There’s nothing at all to celebrate about ME/CFS or FM. As you note there is something to celebrate – the people who are not giving into resignation or despair, who keep their vision alive and keep moving forward…
What a great vision Tom had over 30 years ago – that we could get together and spread awareness and celebrate others who are doing the same. Taking the steps – which is how all great things are achieved.