May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS). May 12th was the birthday of Florence Nightingale, who was believed to have suffered from ME/CFS.
The aims on this day are to increase public awareness of the disease, educate the public, and lobby for more research into the causes and cure for ME/CFS and other Chronic Immunological and Neurological Diseases. Local, regional, and national organizations typically schedule events during the week of May 12, as well as the weeks just prior and after.
How to participate:
Wear Blue
Add a blue or purple ribbon to your FB page
If you have a Twitter account, post something about ME/CFS
Write a letter to the editor using the #MillionsMissing toolkit.
Here is Why Letter to the Editors are Important:
1. You can reach a large audience.
2. Great way to start a conversation around an issue that is important to you.
3. Helpful way to educate and spread awareness about ME.
4. Letters to the Editors are often monitored by elected officials.
5. Letters to the Editors are a great way to catch the attention of
journalists at the newspaper who may write a full article.
As part of the World ME Alliance WAMES is inviting you to use our new custom poster maker ahead of World ME Day on the 12th of May. Create your own poster alongside thousands of others this World ME Day. There are loads of templates for you to choose from See them HERE.
You can also participate in a number of events:
What can the world #LearnFromME? – This May 12th, the World ME Alliance is launching the first World ME Day, and we’re asking “what can the world #LearnFromME? “We want to use this World ME Day to share the realities of living with this disease, to reach out the health professionals and to bring organisations and individuals together, all calling for the world to #LearnFromME. Take part in our film! Send us a short video of yourself (15 seconds), describing something you have learnt from ME. We’ll join these together into one campaign video, to reach others and show the massive knowledge this community has, and the necessity of learning from ME.”
#MILLIONSMISSING GLOBAL VIRTUAL EVENT – Join ME community members and change makers for this event. The event will be an opportunity for our community to gather to experience the stories of those with ME, gain insight from doctors and researchers, connect with those living with Long COVID, and be galvanized to change the narrative and continue the fight for the #MillionsMissing. RSVP HERE>>
See the Millions Missing website for more ways to participate.
Solve ME Advocacy Month – Advocacy Month is an opportunity to share the policy solutions vital to address the growing number of people suffering from ME/CFS and Long Covid. This year Solve ME is focusing on two main requests of the House and Senate chambers of Congress: Please co-sponsor the TREAT Long Covid Act (HR 7482), and Please co-sponsor the COVID-19 Long Haulers Act (HR 2754). See Solve’s full roster of events HERE.
May Momentum launches on May 1st! Every Tuesday during May, OMF will be sharing new, exclusive video interviews with Directors of the OMF Collaborative Research Centers (CRC)s. Videos will be uploaded to YouTube, their website, and shared via e-newsletter every Tuesday in May. These recordings will remain available to watch at your convenience.
Be sure to check the May 12 Facebook page for announcements of ongoing events.