By Erica Verrillo
International ME/CFS Awareness Day was originated by Tom Hennessy, an ME patient and staunch advocate who testified at numerous national and international ME/CFS conferences and meetings. Tom chose May 12th as ME/CFS Awareness Day to commemorate the birth of the famous nurse, Florence Nightingale, who suffered from an ME/CFS-like illness. May 12 is also International Nurses Day.
Over the years May 12 has been expanded to include other neuro-immune illnesses that share many of the features of ME/CFS. At present May 12 includes Fibromyalgia (FM), Lyme disease, and Multiple Chemical Sensitivity (MCS). All of these illnesses employ May 12 as an opportunity to raise public awareness, to contact representatives for more research, and to promote fund-raising activities.
Although it is not formally recognized in the US, International ME/CFS and FM Awareness Day is observed worldwide.
Simple things you can do:
- Wear a blue ribbon for ME/CFS, a purple ribbon for FM, or a green ribbon for Lyme disease and MCS.
- Tweet on May 12. Add #may12 to your tweet.
- If you have a blog or a Facebook page, post something. It can be as simple as an awareness image.
- If you have some spare cash, donate to research efforts. Big Sleep in the UK is raising money for research to find a cure.
Here are some of the activities scheduled for the week of May 12-18, 2015. (Some events are scheduled for the days prior.)
You can see a full list of events (worldwide) HERE.
You can view an updated roster of events HERE.
Light Up the Night Challenge. “The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue (ME/CFS), purple (FM) or green (Lyme and MCS). We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!” To see all the places that are lighting up May 12th go HERE.
#May12BlogBomb is back! May 12th is Awareness Day for ME, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. Every year bloggers use this opportunity to express their views and to raise the profile of these much misunderstood and often maligned conditions. Blog bomb information is HERE.
Google – Create a Doodle. Every year the doodlers ask Google to create a doodle. They’ll ask until Google caves in and does it. Please go to the Facebook page
FIBRO FLARE: “Aunty Acid has agreed to promote International Fibromyalgia Awareness Day on May the 12th! For anyone who may not be aware of Auntie Acid, please visit her page https://www.facebook.com/auntyacid Please also notice it has 7.1 million likes worldwide. This is a huge victory for Fibro awareness as it reaches so many people. They have also been a huge supporter of Autism awareness! We at the Fibro Team are incredibly excited about this! Thank you Auntie Acid!”
The National FM and Chronic Pain Association lists events in 20 states across the US. Click HERE for a complete list. (Each state has a drop-down menu.)
Haines City, Florida: Haines City, Florida has proclaimed May 12th Fibromyalgia and Chronic Fatigue Syndrome Awareness Day.
Newark, NJ. Newark mayor Ras Baraka has proclaimed May 12 “Fibromyalgia Awareness Day.”
New York City: The Caterpillar Walk program is a fundraising campaign designed to raise awareness and support for Fibromyalgia and Chronic Pain. 100% of proceeds raised will support education, advocacy and research efforts. While many walks have taken place across the country to support our work, this is the 1st annual walk in NYC. Our goal is to help bring the Fibromyalgia and Chronic Pain community together. The NYC Caterpillar Walk will take place on Saturday May 9th. Registration: 9:00 am. Where: Hudson River Park (on the river by 23rd Street & West Side Highway). Welcome, Announcements & Awards: 9:45 am. Walk Start: 10:00 am followed by finish line photos, entertainment and an afterparty. Every Walker will receive a T-Shirt and Medal. Due to the generous support of Branded in Brooklyn we can waive the registration for up to 50 walkers. You can find them on facebook or visit their crowd funding page to register HERE.
Danbury, CT. Lyme Conference and Health Fair. Tuesday, May 12, 2015 1:00 pm – 9:30 pm. Location:Western CT State University, West Side Campus Student Center, Danbury, CT. Lyme disease specialist and author Dr. Richard Horowitz is the keynote speaker for our ninth annual Lyme disease patient conference entitled ” Lyme Disease: Why Can’t We Get Better? From Symptoms to Solutions” This event is free. No registration required.
Ridgefield, CT. 9th Annual Lyme Connection Patient Seminar and Health Fair at WestConn on Tuesday, May 12, 2015. “Lyme Disease: Why Can’t We Get Better? From Symptoms to Solutions.” Free and open to the public, the event includes an afternoon integrative medicine workshop from 1 to 4 p.m. with Dr. William Lee Cowden and Eva Sapi, PhD; a Lyme-focused health fair beginning at 6 p.m. and an evening presentation spotlighting the work of Lyme-treating physician and bestselling author Dr. Richard Horowitz at 7 p.m. Lyme Disease Association president Pat Smith will receive the first “Courage in Advocacy Award.” The program concludes at 9:30 with questions and answers.
The Do Something for ME project is designed to raise awareness in the general community about ME/CFS and to raise funds to support Emerge Australia to continue its work advocating for, educating about and providing information on the condition.
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Nanaimo, BC has proclaimed May 12th Fibromyalgia and Chronic Fatigue Syndrome Awareness Day.
Send an email to your MP. A template can be found here.
Charlottetown, Prince Edward Island City Hall will be lit with all three colors on May 12th.
ME/FM Society of BC. In collaboration with the National ME/FM Action Network and the BC Complex Chronic Diseases Program ME/FM Society of BC will present talks by Dr. Daniel Peterson and Staci Stevens. When: Sunday May 24th, 2015 1:00 pm – 5:00 pm. Doors Open 12:30 pm. Where: Paetzold Lecture Theatre, Jim Pattison Pavillion, Vancouver General Hospital, 799 West 12th Ave, Vancouver. Entry for Members: $10 / Non-Members: $20. Memberships ($25) are available at the door. Space is limited, so please RSVP: 604-878-7707/1-888-353-6322. Please leave a message with your name, phone number and # of tickets.
Langevan Bridge in Calgary, Alberta will light up on May 12th. along with many other places, buildings and spots like the Niagara Falls (will light up blue on May 12th at 10pm It can be watched on either of these 2 webcams HERE or HERE) and the city halls of Mississauga, Ontario; Brampton, Ontario; Ottawa, Ontario; Halifax, Nova Scotia and Toronto, Ontario. The Montreal Olympic Stadium in Quebec will be lit with all colours and the Ontario’s CN Tower in Toronto will be lit with all 3 colours (blue for ME, green for Lyme and purple for fibromyalgia).
Vancouver. Opera Mariposa is bringing audiences a night of musical theatre showstoppers in support of chronic neuro-immune disease awareness. On Saturday, May 16th, sopranos Jacqueline Ko and Robin Eder-Warren, baritenor Kyle Preston Oliver and pianist Chris Feige will present ‘Tour de Force,’ a Broadway benefit show at Marpole United Church. The performance will honour the International Awareness Week for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS & FM), and a portion of every ticket sale will go to the National ME/FM Action Network. Tickets start at $15 and are available at operamariposa.com or from Brown Paper Tickets at 1-800-838-3006.
Join Germany’s May 12 Thunderclap.
ME/cvs Vereniging is making an appeal to all readers of its facebook and site. Which song or poem or book or film helps you somewhat in hard times? You may explain in a few words why, but it’s not obligated. Sending the link to it suffices. If you are on twitter, please send them a DM, but you can also respond by email: firstname.lastname@example.org. On May 12 they will publish all tweets using ?#12MEi and your first name. They do hope a lot of people will join them again so that they will create a lot of attention for ME!
Newlands Cross. On May 12, at Bewleys’ Hotel, Newlands Cross from 10 AM-12PM, and 1PM-2PM at Leinster House, there will be coffee with guest speakers.
- Saturday, May 30: 2:45 pm, Connacht Hotel (formerly Carlton Hotel), Dublin Road, Renmore, Galway City. Hotel tel: 091 381 200. http://theconnacht.ie/ Free parking.
- Sunday, May 31: 11 am, Carlton Hotel Dublin Airport, Old Airport Road,Cloghran (Santry), Dublin Airport, Co. Dublin. Hotel tel: (01) 8667500. E-mail: email@example.com . Free parking.
Celbridge Co Kildare. From Trisha in Ireland: For International awareness Day May 12th I am having a Tea/Coffee Morning From 9.30 to 12.30 at my home in Celbridge Co Kildare with the kind help of Fionnuala Kelly Monahan. It will be a pop in at a time that suits you feel free bring a cake or buns there will be a cover charge of €5 all money will go directly awareness fund. Everyone will be asked to wear something purple as we will be taking lots of photos.
You will be given a Raffle ticket on arrival as my son’s girlfriend Rebecca has kindly Donated a Pandora Jewellery Box as prize to be raffled at 12.30. Please bring a friend neighbour your mum daughter all will be so welcome let’s make it the best we can. I will be adding extra boxes of tea and coffee to my shop over next few weeks to make sure everything on the day donated goes to our cause as every cent will make a difference. Why don’t you try do the same in your area?
AISF ONLUS (the Italian Association for Fibro and CFS) isorganizing an event on the 10th of May in Verona.
Thunderclap from Japan
In Sweden, wear something blue on May 12.
RME’s different Facebook pages and groups will be observing 12th May by using a Remember ME header from the 10th of May to the 13th. For more information click HERE.
Walk for ME: UK is arranging an international Walk for ME. The idea behind Walk for ME is that friends and family of an ME sufferer do a sponsored walk, run or swim on their behalf, hence the name Walk for ME or Walk for me. Walk for ME has had walkers, runners and swimmers across England, Scotland, Wales, Ireland, the Isle of Man as well as in Spain, New Zealand and both coasts of America and in total has raised over £28,000 including gift aid. Wherever you are, we hope you’ll become involved this year! It is hoped that as many friends and loved ones as possible will do a sponsored walk or other sponsored event during ME Awareness week which runs from 11th May to 17th May 2015. See event details HERE.
Afternoon Tea: An afternoon tea will be held in the Tyme Trust’s home county of Essex. The event takes place in ME Awareness Week, in the Summer Parlour at Ingatestone Hall, on Monday 11th May, from 2.30-4.30pm. Ingatestone Hall is the ancestral home of Lord Petre, Lord Lieutenant of Essex, who will be addressing our guests. We will be presenting our new ME Awareness publication. You can find out all about the Hall at www.ingatestonehall.com If you would like to attend, please email us as soon as possible on the Contact Us form at www.tymestrust.org. There will be an opportunity to meet our Trustees and volunteers.
Big Sleep for ME: Raising finds for a cure.