By Clark Ellis
International myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Awareness Day is recognized on May 12th each year. May 12th -18th is awareness week and the whole of May is awareness month. These events also recognize fibromyalgia (FM), multiple chemical sensitivities (MCS) and Gulf war syndrome (GWS).
As is common with other awareness campaigns, ribbons are worn to show support of the awareness campaign. A blue ribbon is used to represent ME/CFS, a purple ribbon for FM, and a green ribbon for MCS. A butterfly is also used symbolically to represent a person breaking free from a life restricted by ME/CFS.
Taking a lesson from HIV
HIV groups have more than a dozen awareness days a year, some raise awareness specifically for men with the disease, others for women, children or particular ethnic groups. At the end of a year of awareness campaigning they all unite together to promote World AIDS Day on December 1st .
The story is similar with other diseases we’ve all heard of: cancers, hepatitis, diabetes, rheumatoid arthritis, motor neurone disease, etc. Though some awareness days for these diseases were started with support from the World Health Organization (WHO) or the Centers for Disease Control and Prevention (CDC), many had humble beginnings, launched by one or two individuals who wanted to overturn ignorance of their disease.
HIV-AIDS awareness campaigns have had a drastic effect on the way in which the disease is perceived by the public and by government; just like ME/CFS, they had many prejudices and stigmas to overcome. Today, ME/CFS is one of the most prevalent diseases in the West, with significantly more sufferers than HIV-AIDS and awareness of that has been gaining momentum recently. As with any campaign, getting off the ground can be difficult, but eventually there is a point where a critical mass is reached and that’s when big changes happen. This was true with HIV-AIDS and eventually – perhaps soon – it will be true of ME/CFS as well.
History of ME/CFS Awareness Day
In the early 1990s a man named Tom Hennessey founded an organization to promote awareness for a spectrum of chronic immunological and neurological diseases, including ME/CFS, FM, MCS and GWS. He then set about picking a day of the year to be designated awareness day for these diseases.
Tom chose May 12th as ME/CFS Awareness Day to commemorate the life of the famous nurse, Florence Nightingale, who suffered from an ME/CFS-like illness from her early 30s. She was born on May 12th, 1820 and after volunteering to nurse soldiers in the Crimean War she became severely ill with ME/CFS symptoms, which may have been as a result of Brucellosis. Because of the pioneering work of Florence Nightingale we share this day with International Nurses Day.
As the 90s progressed, support for our awareness day grew, particularly in the ME/CFS and FM communities. Several organizations played a part, some of which still exist and some don’t. There were several major promoters of the awareness day in Canada including the National ME/FM Action Network, and in the UK the Blue Ribbon for the Awareness of ME (BRAME) were instrumental, not only in the UK but internationally, as a result of their campaigning for the day to be adopted in other countries.
Recognition grew as more organizations and individuals took up the mantle and over the years several governments from different countries have acknowledged the date for ME/CFS and FM, giving it credibility and recognition.
With the rise of social media, a group launched a few years ago on Facebook called May 12th and because Facebook is such a good tool for campaigns like this, several of the original awareness groups rallied round to support it. The group currently has around 10,000 'Likes' and grows every day.
What’s the point?
The main aim of awareness days are to educate those who don’t know about the disease; this may include members of the public, employers, service providers as well as government and medical officials.
Awareness days are particularly important in diseases like ME/CFS where many people are not well informed, or are oblivious to the disease. The same is true for FM, MCS and GWS.
Even those who already know of ME/CFS may have misconceptions about the disease; they may believe that the disease is not that serious, or that it’s psychological, and they may hold these views because they don’t know any better; it’s what they were told and no one has challenged those beliefs before.
They may not realize that many sufferers are children, that the illness is progressive and leaves many patients bed-bound and that in addition to fatigue, pain and post-exertional malaise, patients suffer from immune dysfunction and a plethora of other symptoms.
The awareness day also provides fundraising opportunities, which can help generate important funds for organizations representing the patient community that are often run on small budgets, by volunteers who suffer from these diseases themselves.
The extra boost in awareness achieved on the day itself helps to stimulate further progress throughout the year. One example of this in the UK was the All Party Parliamentary Group on ME which was founded as a result of the May 12th awareness campaign in the 90s.
Together, we are many. It is one of our greatest strengths and opportunities. The difficult part is getting a large distributed community like ours to carry out a coordinated effort. What is so good about awareness days is that you don’t need to coordinate centrally; you are united by the date, irrespective of how local groups or individuals cultivate awareness on the day. Even if you can only do something small, you do this knowing that you are part of a much larger global effort.
Where to go for more information
There are many ME/CFS and FM organizations fighting to improve awareness of these conditions all year round in different parts of the world, but most make a special effort for May 12th so it is worth checking with your local groups to see what they have planned.
The CDC have a couple of lists of disease observance events that occur throughout the year, and Fibromyalgia is on one of these. ME/CFS is not yet on one of the CDC’s lists. If you want to change that then you can email the CDC here, and politely make them aware of the awareness day and ask them to list it on their site. In time we hope that the CDC will get behind the day and support it more fully, as they do for many other diseases on their list.
How can you get involved?
The most important thing that you can do is tell someone about the disease who perhaps isn’t already familiar with it. You don’t have to force them to read every page of the International Consensus Criteria but you could provide them a brief oral explanation of the disease or hand them a pamphlet from your local ME/CFS organization.
You could wear a ribbon or encourage someone you know to wear one. There are a few places that sell the ribbons, usually in exchange for a small donation. If you are feeling creative, or can’t get hold of a ribbon locally, then you can make your own.
If you have Facebook then you can ‘Like’ the pages of ME/CFS & FM organizations such as May 12th and share it on your wall, or email links to your contacts. The May 12th Facebook group also encourage you to get support and visibility of your awareness day activities by sharing your plans on their Facebook page. The Blue Ribbon Campaign Facebook page is another good place to find events.
Another popular thing you can do is to change your profile picture on the day to a poster of a blue ribbon. (Go to Google images and search "CFS blue ribbon.")
If you’re a blogger then you can blog about awareness day on the 12th and if you have a webcam you could upload a simple video of yourself to YouTube where you state who you are, that you have the illness and that you are uploading a video because it is CFS/ME International Awareness Day.
Raising awareness is a cumulative effort, and if we keep telling people about the disease, making sure they know how many people have it, how debilitating it is, and how they, or their family, could one day get it too, then we will continue to make progress. Uniting on a single day each year to spread this message is an opportunity to make big strides in this endeavor.
However you decide to promote international ME/CFS & FM awareness day - even if your contribution is only small - know that our collective actions will be making a substantial difference.
Worldwide activities for May 12 Awareness Day
May 12 Neuroimmune Diseases International Awareness Day: Links to events all over the world. The list is updated, so check back for an event in your area.
CFIDS Association of America: Information packets for distribution and other recommendations for activities.
FM/CFS/ME Resources: Great tips for how to get involved.
Please Create a Doodle: Facebook page for raising awareness.
NOVA: (US) Long list of advocacy efforts and events.
Doylestown FMS & ME/CFS Community and Support Group: (UK) This group did a Walkathon last year.
AYME (Association for Young People With ME): (UK) Has a press release form you can fill out and send to local media. Tell your story!
The ME Association: (UK) Many events are listed here. List yours!
ACT (ME/CFS Society, Inc.): (Australia) "Down Under" activities and fundraising.
Don't Diagnose Me: (Canada) Living With "Invisible Conditions": Canadians in Ontario will be meeting at the Legislature Building on May 7th. Sign up here.
Edmesh (Edinborough ME Selfhelp): (Scotland) Will be holding a walkathon on May 19th. Even if you can only walk a few steps you can participate.
Opera Mariposa: (Canada) Gala fundraiser in honor of the International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia, and 100% of ticket sales will go to the BC Women’s Hospital Foundation in support of the Complex Chronic Disease Program.
Walk for ME: This group sponsors public walkathons to help draw attention to ME/CFS. They have a great website.
ME: A Living Death: (UK) "Lie-In" planned for on May 12, at 2:30 PM across from the House of Commons in London. More information HERE.