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International Awareness Day
Sunday 12 May 2013
From Cort Johnson's Health Rising:
International Awareness Day, May 12th 2013: Worldwide Protests and Events
Mark takes a look at what’s going on around the world this weekend to mark International Awareness Day
May 12th is International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Awareness Day events also recognize Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS), Gulf War Syndrome (GWS), Lyme Disease, and other chronic neuro-endocrine-immune diseases (NEIDs). Awareness Week runs from May 12th-18th, and the whole of May is Awareness Month. As with many awareness campaigns, ribbons are worn to show support for the campaign – blue for ME/CFS, purple for FM, and green for MCS.
A multitude of Awareness and Fundraising events are taking place this weekend, all across the real and virtual worlds, so I’ve been trawling the web to find out what’s going on. I found an incredible range of events – educational walks and fun runs; a gala fundraising concert in Vancouver, Canada; Sleepathons and Virtual Discos on Facebook; talks featuring Drs Bateman, Kogelnik and Vallings (the Bateman and Kogelnik talks will be webcast)… and just when you thought you’d seen it all, Bob Miller is Skydiving to raise money for Simarron Research!
In the UK, the major event is the ‘All Fall Down for M.E.’ protest outside parliament; there are also over 50 Lyme Disease Awareness Protests in more than 25 countries. I’ve listed all the major events I could find below – if I’ve missed something significant, please add your comments to this article and I’ll add your event to the list.
How to Get Involved
Clark Ellis has written a good article on ProHealth summarising the history of ME Awareness Day (founded by Tom Hennessey in the early 1990s in commemoration of Florence Nightingale’s birthday), and exploring where you can go for information and how to get involved, so I won’t duplicate that here… but I’ll just offer a few general thoughts and ideas to get you started…
- You don’t have to leave the house to get involved. You can ‘Like’ the pages of ME/CFS and FM organizations, change your profile pictures to the ME/CFS blue ribbon (just search google for ‘ME/CFS blue ribbon’ or check out the ME Awareness Words and Pictures using the link below), upload a video of yourself to YouTube, or simply email your friends asking them to donate to your favourite ME/CFS charity.
- Don’t forget the ‘real world’! Letters to the local press, or your local and national government representatives, can reach a wider audience who may not stumble across the online campaigns. There are some great ideas from FM/CFS/ME Resources; see the link below.
- If you’re thinking of organizing an event or demonstration, check out Rivka’s guide first (under Resources below).
- Whatever you’re doing, don’t forget to ask for money as well. Awareness is all-important, of course, but if you’re talking to the public, make sure you also recommend your favourite charity or non-profit – ideally an organization that funds biomedical research (as well as Phoenix Rising, of course!). Offer people a way to make a positive contribution.
- Remember that ME Awareness lasts for the whole of May, and you can campaign and fundraise whenever you like: if you’re out of time to do something for the 12th, you can still do it later, when you have time and energy.
- Above all, make it fun! Whatever you do, it will be more successful if you enjoy it!
Resources
ME Awareness: Words and Pictures
FM/CFS/ME Resources: Awareness and Advocacy Tips
CFIDS Association of America (CAA): Ideas for Support Group Awareness Activities
CFIDS Association of America (CAA): Awareness Day 2012 Information Packet
“How to” guide for ME/CFS demonstrations (by Rivka Solomon)
Events Calendars
May 12th Awareness Facebook Page
https://www.facebook.com/may12th.awareness
The May 12th Facebook group encourages you to promote your awareness day activities by sharing on their Facebook page. Over 10,000 Likes, and a great source of information on ME/CFS and FM Awareness events.
MEA Events Calendar
http://www.meassociation.org.uk/?page_id=1358
The ME Association’s calendar lists various Awareness Day events across the UK, including the reMEmber ME Awareness Day Conference in West Sussex on May 11 with Dr Bansal speaking; a day of live music in Maryport, Cumbria; National ‘Wear Your PJs with Pride Day’; and 5 runners in the Sheffield Half Marathon raising money for the MEA.
National Fibromyalgia and Chronic Pain Association: Awareness Day Events
The NFMCPA lists Awareness Day events throughout the world, with interactive maps showing events by country and state by state in the US.
Protests and Demonstrations
All Fall Down For M.E.
Where: Opposite Houses of Parliament, London UK
When: 2.30 for 3pm, Sunday May 12th
Web: http://www.me-alivingdeath.org.uk/meawarenessevent.html
Facebook: https://www.facebook.com/events/325645887538120/
A cross-charity event organized by parents of children with M.E. and London M.E. Support Groups. At 3pm, the participants will all ‘fall down’ and lie silent and still for 2 minutes, ‘to represent the brain/body collapse and pain our loved ones have to suffer day in day out, year in year out, with no end in sight’.
If you want to run a similar event in your local area, send them the exact location and time and they’ll provide a modified version of their promotional flyer: See here for details.
The full article can be found here.
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