By Erica Verrillo
For those who are not familiar with the history of May 12th International ME/CFS and FM Awareness Day, it was started in 1992 by Tom Hennessy to promote awareness of chronic neuro-immune diseases, including ME/CFS, FM, MCS and GWI. Tom chose May 12th as ME/CFS Awareness Day to commemorate the life of Florence Nightingale, who suffered from an illness much like ME/CFS (probably brucellosis). May 12th is her birthday.
Tragically, Tom died in September 2013 after a 25-year battle with ME. He was 59 years old.
Why hold an awareness day?
International awareness days are intended to draw attention to specific medical or ethical problems. They are particularly important for diseases that are poorly understood by the general public, such as ME/CFS, Gulf War Illness, and fibromyalgia. Awareness events that draw media attention are good opportunities to present the facts about the illness, and to correct misconceptions.
In the case of ME/CFS, most physicians, as well as the general public, believe that the disease is not particularly serious, or that it’s psychological. The only way to challenge those beliefs is to hold an event that will increase their understanding of how the illness affects people. This is called raising awareness, and it’s a necessary step, not just for educating the public, but for gaining acceptance in the medical community.
An international awareness day not only helps educate the public, it provides fundraising opportunities for charities and for organizations that advocate for the patient community. Usually, these organizations are small and any funds that can be garnered through a May 12th event, will go a long way to furthering their mission to aid the community.
Having an awareness day allows many local groups to plan simultaneous events. These combined efforts go a long way toward promoting the interests of those who are ill and disabled. Even if you can only send an email or a tweet, you are part of a much larger global effort. With thousands of individual actions, however small, we can raise a mighty voice.
How you can participate
There are many events, worldwide, to commemorate May 12th, not all of which involve travel, or even an expenditure of energy. There are email campaigns (this is a good time to contact your representative!), twitter campaigns and thunderclaps, as well as online fundraisers. Every act of participation during this week, no matter how seemingly small, amplifies the efforts of everyone one else.
May 12 Neuroimmune Diseases International Awareness Day: This site explains why May 12 is important and makes suggestions for things you can do to show your support.
FM/CFS/ME Resources: Provides good tips for how to get involved without expending a lot of energy. http://fmcfsme.com/awareness.php
Please Create a Doodle: This is a Facebook page with all sorts of events, fundraisers, and other ways to increase awareness.
Walk for ME: This group sponsors public walkathons in the UK to help draw attention to ME/CFS.
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.
This year, May12.org has developed an easy way to spread awareness across social media with a May awareness overlay for your Facebook, Twitter or other social media profile photo.
Donate! There are many charities and research groups that need finds.
Share Your Graded Exercise Story!
For ME Awareness month (May) and Millions Missing we want to share your experiences of graded exercise therapy. We will post your story here and share in various places online.
If you or someone you know has a graded exercise therapy story to tell: Email GETpetition@gmail.com your story in a couple of paragraphs.
Please also ask people you know who have a powerful story to contribute. We are particularly interested in hearing about children who have done graded exercise therapy.
A specific hashtag for this is #MissingMoreGET, so we can share on social media can you use various combos of #MissingMoreGET and #MillionsMissing #MEawarenesssmonth #stopGET #May12
To get updates when Missing More posts are published, follow us on:
Twitter: @stopGETteam / @MEActNetUK
Read more information HERE.
A Thunderclap is a crowd-speaking platform that helps people be heard by saying something together. If the supporter goal is reached, Thunderclap will blast out a timed Twitter, Facebook, or Tumblr post from all your supporters, creating a wave of attention. The beauty of Thunderclaps is that they are absolutely effortless. All you have to do is click.
It's May12th Awareness Day Thunderclap!
Support Aussie ME/CFS patients Thunderclap!
Raise Awareness! Tell someone!
LIGHT UP THE NIGHT
Light Up the Night Challenge – see event https://www.facebook.com/events/1091121300980705/ . We are asking you to light up public buildings and your own residence with one of the three colors: blue (ME, CFS), purple (FM) and green (MCS or Lyme). If you light your own house, send a picture to LightUpTheNight@may12th.org by May 31st. Let us know if you can take a picture of any of these Landmarks:- Niagara Falls, Ontario, Canada, Aspam Building, Japan, Houston City Hall, Houston, Texas, USA. Also let us know of any buildings that will light up.
MAY 12 BLOG BOMB
During the week of May 15, more than 30 advocates from all over the U.S. will be in Washington, where they will visit with members of Congress. The purpose of the visit is to start building a relationship with our representatives. The more our representatives learn about ME/CFS and our concerns, the more responsive they will be. So far, thirty members of Congress have signed a bipartisan letter urging NIH to establish a strategic plan and to complete the CDC multi-center study. Please call your representatives to ask them to support increased funding for ME/CFS research! You can also sign up to meet with your representative on May 17 HERE.
Niagara Falls will light up blue on May 12th at 10pm for 15 minutes. It can be watched on either of these 2 webcams http://www.earthcam.com/canada/niagarafalls/ or http://www.niagarafallslive.com/niagara_falls_webcam_info.htm. Please see the illumination schedule at http://www.niagaraparks.com/niagara-falls-attractions/niagara-falls-illumination.html.
Brechin, Ontario will decorate their main street with awareness ribbons. The Ramara libraries will also be decorated.
Opera Mariposa will have a concert on Saturday, May 13th to benefit ME/CFS.
May 12, 2017: The City of Edmonton, Alberta will light up the High-Level Bridge in blue starting at dusk, in honor of International M.E. Awareness Day. The M.E. Society of Edmonton is celebrating Awareness Day on Saturday, May 13, 2017. We will be showing a seventeen-minute show on “What happens when you have a disease doctors can't diagnose” by Jennifer Brea
Mississauga will light the Civic Centre clock tower purple for May 12th from 8pm (will also notify Mayor Crombie and Members of Council to share campaign, include on Community Recognition Calendar on City website, post to City’s corporate social media)
Action CIND is hosting a webinar where Dr Patrick McGowan will present his recently released paper on Epigenitics and ME/CFS (http://bmcmedgenomics.biomedcentral.com/articles/10.1186/s12920-017-0248-3). He will also discuss the role of Epigenetics in ME and FM and take questions. To register go to https://attendee.gotowebinar.com/register/6322127370758062851?source=bitly
MEAO is holding an event at Queens Park on the afternoon of May 9th. Register with them by April 27th. Contact email@example.com for more information.
The Irish ME/CFS Association is pleased to announce that it has arranged for Dr Ros Vallings, a leading international ME expert from New Zealand, to give 3 Irish ME/Chronic Fatigue Syndrome talks this May. The talks will include questions-and-answers sessions.
Wednesday May 24: 7:30 PM Maldron Hotel Sandy Road Galway (not to be confused with the Maldron Hotel in Oranmore)
http://www.maldronhotelsandyroadgalway.com/ Tel (for hotel): 091513200. Free parking.
Friday, May 26: 11:30 AM Great National South Court Hotel, Raheen Roundabout, Limerick http://www.southcourthotel.com/ 061 487487. 400 free car parking spaces
Sunday, May 28: 2:30 PM The Maldron Hotel Dublin Airport http://www.maldronhoteldublinairport.com/ 01 808 0500 Car parking: E5 (get your ticket ratified at the reception). Linda Tannenbaum, CEO/President of the Open Medicine Foundation (link to: https://www.omf.ngo/ ), is also speaking at the Dublin meeting.
Blue Sunday – May 21, 2017
“I started ‘Blue Sunday’ in 2013 as a way of fundraising and raising awareness of M.E. I felt something was needed to commemorate International M.E. Awareness Week each May but, as M.E. sufferers are so restricted by their ill health, the ‘conventional’ methods of fundraising, such a running a marathon, weren’t appropriate. Many of us are still able to drink tea and eat cake though. I for one would go so far as saying I’m actually very good at it! ‘Blue Sunday’ is now celebrated internationally with other sufferers hosting their own tea parties both online and at home.”
The 2015 event raised a total of over £5000 which was split between three charities: The ME Association, Invest in ME, and ME Research UK.
Europe will host its third #MillionsMissing Day of Action on May 12th. Organizers from groups across Europe are working together to share ideas and prepare for their awareness events. Cities everywhere are encouraged to participate alongside in organizing their own rallies and events.