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, and you can watch live on the internet as the Niagara Falls is illuminated in blue to represent ME and in purple to represent Fibromyalgia!
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!
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)
May 12th Awareness Facebook Page
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
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
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.
Worldwide Lyme Disease Awareness Protest
Where: Over 50 protests and events in over 25 countries
When: May 10-11
Facebook (Worldwide): www.facebook.com/worldwidelymeprotest?fref=ts_
Facebook (US): https://www.facebook.com/pages/Worldwide-Lyme-Protest-US/111527755675190?fref=ts
International Facebook links: https://worldwidelymeprotestaustralia.weebly.com/countries-involved.htm
Webcasts and Speaker Events
ME/FM/MCS International Awareness Day Speaker Event (Webcast)
Where: Calgary, Alberta, Canada
When: May 12
Speaker Information: https://eleanorsteinmd.ca/wp-content/uploads/downloads/2013/04/May-12th-speaker-information.pdf
Dr Eleanor Stein presents a live webcast Speaker Event, featuring Dr. Lucinda Bateman MD, Janet Sperling MSc, and Dr. Andreas Kogelnik MD. To join the webinar use the following link. When the login page comes up, select Guest and then enter your name in the space provided. https://prowebinars.adobeconnect.com/r19eynpq2ys/
You can test your computer’s setup in advance (recommended) by using the following link:
Dr. Rosamund Vallings Talks
Where: Limerick, Galway, Carrick-on-Shannon, Dublin, Ireland
When: May 21-25
The Irish ME/CFS Association present four talks by Dr. Ros Vallings from New Zealand.
Fundraising and Awareness Events
Bob Miller Skydives for ME/CFS Research
Where: Lodi, California, USA
When: May 12
Bob Miller will be “Jump-N-4-ME” to raise awareness for ME/CFS and to raise funds for Simarron Research. Those donating $25 or more will receive a t-shirt to commemorate the event.
Niagara Falls Goes Blue
Where: Niagara Falls, Canada
When: May 12, 9:45 to 10:00 PM EST
Live Webcam: https://www.niagarafallslive.com/Niagara_Falls_Webcam.htm
The May 12th ME/FM Facebook page team have arranged to have Niagara Falls lit up with ME/FM colours. The Niagara Parks Commission of Niagara Falls Canada has confirmed that Niagara Falls will be illuminated in blue from 9:45 to 10:00 PM EST representing Myalgic Encephalomyelitis, and illuminated in purple from 10:15 to 10:30PM EST representing Fibromyalgia. The event can be watched live on the falls webcam.
Going Blue for M.E. – ME/CFS Educational Fun Run
Where: Melbourne University, Victoria, Australia
When: May 14
Medical, Physio and Allied Health students and lecturers take part in a fun run/walk around 6 stations learning about ME: Ability/Disability rating scale, Symptoms, Testing maximum heart rate v person with ME/CFS, Observing brain Images with ME, and Learning about diagnostic criteria for ME.
Walk for ME
When: ME Awareness Week, or any other time
The idea of Walk for ME is that friends, family and loved ones of an ME sufferer do a sponsored walk on their behalf to raise funds for biomedical research. The website provides instructions on how to use JustGiving.com to set up your ‘personal challenge’, select your charity, and join the Walk for ME team fundraising target. Walk for ME is raising funds for UK charities ME Research UK and Invest in ME.
Opera Mariposa: “The Singer”
Where: Vancouver, Canada
When: May 12
Gala fundraising concert in honour of International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia, with 100% of ticket sales going to the BC Women’s Hospital Foundation in support of the Complex Chronic Disease Program.
Facebook and Internet Events and Campaigns
The Big Sleep for ME
Fundraising and Awareness Event organised in support of Invest in ME’s Centre of Excellence for ME. Featuring a Sleepathon, Virtual Disco (May 11), How many Bears? competition, poems from the Big Sleep Bard, relaxing music, PJ Day, Big Sleep Walk for ME, and more.
Action for M.E.: Speaking up for M.E.
When: By May 22 at the latest
Action for M.E. are inviting patients, carers, friends and family members to speak up about M.E. by contributing a film clip for their M.E Awareness Month film, to be screened online in May and beyond. Film a clip of yourself starting with your name and the phrase “I’m speaking up for M.E. because…”, and email it to Joe at Action for M.E.
Google Doodle 4 May 12th
When: Any time
Visit the Google 4 Doodle page and click the ‘like’ button: the target is to reach 10,000 likes to ask Google to create a doodle for May 12th, 2014.
May12.org: Neuroimmune & Autoimmune Diseases International Awareness Day
When: May 10-12
Facebook Event for all Chronic Immunological and Neurological Diseases. Web page has a good list of ideas on how to promote Awareness Day.