Saturday, August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe myalgic encephalomyelitis as well as a day of remembrance.
August 8th was the birthday of Sophia Mirza, a 32 year-old woman who died of ME.
Here are three ways you can observe the day:
1) Join the Twitter storm
Tweet all day all the time using the hashtag #severeme. Show solidarity and help severe ME patients trend the hashtag.
2) Remember those who have died
Today is an opportunity to remember and honor the lives of those who have died.
– National CFIDS Foundation Memorial List
– Hummingbird Foundation for ME Memorial List
3) Break the Silence
Participate in the #sufferingthesilence campaign. Whether you are a caretaker, a patient, or a friend, you can take a photo of yourself in the pose above and share it on social media (Twitter, Facebook, Instagram, etc.).
Use hashtags #sufferingthesilence #MEAction and #severeme (email us or find us on Twitter or Facebook – we’d love to aggregate the photos!)
4) Share the good news
The Open Medicine Foundation has just received an anonymous $500,000 donation for their research on severely ill patients! Their study – the first of its kind – will include many bedridden subjects.
Which makes for #4.5: donate to the OMF and help them find what the severely ill can teach us about ME.
How will you observe severe ME day?
Photo credit: Elaine Boel
2 thoughts on “Four ways to Observe Severe ME Awareness Day”
Thankyou for publicising this 🙂
I have Severe M.E., more than a decade now
25% M.E. recently published a 4-page “Briefing Care Paper”
titled: Home Care Delivery
Looking After People with Myalgic Encephalomyelitis (M.E.)
http://www.25megroup.org/Campaignging/Severe%20ME%20Day/2015/Home%20Care%20Briefing%20Aug%202015.pdf
this goes through some of the pitfalls that novice carers and care providers of people with M.E. are likely to trip into. I find it well written.
for those not well versed the pdf is worth a look, it puts quite a few things in context.
As being a M E sufferer for over 20 years now.Any M E awareness is hopefully a movement in the right direction for a cure
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