Three ways to mark today, Severe ME Day - #MEAction

[Sasha]

Excellent ideas from #MEAction:

THREE WAYS TO CELEBRATE SEVERE ME AWARENESS DAY

Saturday, August 8th is Severe ME Awareness Day. Here are three ways you can celebrate:

1) JOIN THE TWITTER STORM
Tweet all day all the time using the hashtag #severeme

2) 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!)

3) SHARE THE GOOD NEWS
The Open Medicine Foundation has just received an anonymous $500,000 donation for their research on severely ill patients! It will include many bedridden study subjects – the first of its kind.

Which makes for #3.5: donate to the OMF and help them find what the severely ill can teach us about ME.

 

[Sasha]

Which makes for #3.5: donate to the OMF and help them find what the severely ill can teach us about ME.

I can't tweet but I'm doing this one, for sure!

 

[K22]

I agree with taking positive for the severe on this day & generally think me action are fab. I would not call it "celebrate" at all (very odd choice of word) but marking, the other half of the purpose of the day is to remember those who have not made it through to this day including Sophia Mirza whose birthday it would have been today

 

[Sasha]

I agree with taking positive for the severe on this day & generally think me action are fab. I would not call it "celebrate" at all (very odd choice of word) but marking, the other half of the purpose of the day is to remember those who have not made it through to this day including Sophia Mirza whose birthday it would have been today

Good point about 'celebrate' - I've changed my thread title accordingly and have made it clear that Severe ME Day is today.

I really hope those who can will donate to the END ME/CFS study.

Raising awareness is great - and raising money is key to making rapid research progress.

I think the next two or three years - the rixutimab trials, the END ME/CFS study, the CII microbiome study - could be transformative for us.

 

[worldbackwards]

Excellent blog here by disability activist Catherine Hale about her illness:

Severe M.E. is hidden away because it is a huge medical embarrassment.

My wish is that the medical establishment examine its conscience, wipe the slate clean and commit the funds to research and treatment proportionate to the devastation that this illness causes, both to individual lives as well as the cost to the economy.

Until then my wish is for people with severe M.E. to be accorded greater dignity, compassion and support. That can't happen until the world knows they exist.

http://limitedcapability.blogspot.co.uk/2015/08/severe-me-day-2015.html

 

[Alison2]