This year marks the 30th anniversary of the Incline Village outbreak, making this a special May 12th for people with ME/CFS.
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. This is your chance to support the courageous individuals and organizations trying to make life better for those with ME and CFS.
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.
Contact your representative
For US citizens, it is very easy to contact your representatives.
Simply go to Contacting Congress. Click HERE.
Type in your zip code. Your representatives will pop up, along with contact links. Fill out the form. (You only have to do this the first time. It will fill automatically in the future.)
Paste your message into the box and click Send!
Are you at a loss for what to say? These are some key points that you may want to mention:
I am a constituent who is ill with myalgic encephalomyelitis, also known as chronic fatigue syndrome. In spite of affecting over a million people in the US, this is a disease which has gotten very little funding over the past three decades. ME is not a benign disease. It has disabled hundreds of thousands of people in the US, and, in some of the more severe cases, has been fatal. The economic loss in the U.S. is calculated to be $17-23 billion dollars annually. Please ask NIH to allocate more funds to study this illness, and to help find a cure.
UK citizens, find your MPs here.
Currently it is estimated that some 250,000 people in Britain are affected by this illness. A report by Sheffield Hallam University’s Survey and Statistical Research Centre estimated M.E.s cost to the UK at 6.4 billion pounds per year.
Australians, find your MP here.
150,000 Australians are estimated to have ME/CFS. In 1992, Lloyd and Pender estimated that ME/CFS cost the Australian government in excess of $25 million and cost the Australian community approximately AU $59 million. Imagine what the economic losses must be today.
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.
There are three thunderclaps planned for May:
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If you write a blog, Just ME has scheduled a blog bomb for May 12. What’s a blog bomb? It’s a timed release of blogs about a single topic. In this case, blogs about ME/CFS, FM, or chronic Lyme disease would all be posted on May 12, and then shared via twitter and Facebook. Read more about it here.
US Activities for May 12th Awareness Day
San Francisco, CA
On Monday, May 12 from noon – 1PM, there will be a gathering in front of the regional HHS headquarters at the Federal Building, located at 90 7th Street.
This will be a peaceful event. (A permit has been obtained.) The theme for this gathering is “30 Years of Neglect,” a message which will be displayed prominently on a banner.
Portraits of people who have died of ME/CFS will be placed in empty wheelchairs, in order to draw attention to the fact that ME/CFS is not a benign disease, and that it not only disables but can be fatal. After the gathering, those who wish to send a message to our representatives can join us in McKesson Plaza (five blocks away) in front of Senator Feinstein’s office. A bathroom is available in the café next to the Federal Building, as is food. If you are in the Bay Area, please join us!
For more information contact: Erica Verrillo : firstname.lastname@example.org
There will be a demonstration at the Capitol Building on Monday, May 12, from noon to 1:30 PM. Our representatives need to be aware that ME/CFS is a serious disease. We are their constituents, and we vote!
The federal government needs to see that we care! Please join us in Washington!
Please contact Mary Dimmock at MECFSAction@yahoo.com for more details.
Please let Mary know if you would like to attend so she can finalize plans for the event.
Worldwide activities for May 12 Awareness Day
May 12th Facebook page: This is a great resource for finding out what is going on – and where.
May 12 Neuroimmune Diseases International Awareness Day: This site has links to events all over the world. The list is updated, so check often to see if there is an event in your area.
FM/CFS/ME Resources: Provides good tips for how to get involved without expending a lot of energy.
Please Create a Doodle: This is a Facebook page with all sorts of events, fundraisers, and other ways to increase awareness.
The ME Association: (UK) A long list of various events (in the UK) is posted here.
Walk for ME: This group sponsors public walkathons in the UK to help draw attention to ME/CFS.
MEFM Action Network Facebook page features May 12 events all around Canada.
ME/CFS Australia is hosting a high tea and other events for May 12th awareness.