As you may know, the general public, medical professionals and politicians are mostly unaware of the prevalence and severity of myalgic encephalomyelitis (ME) in the U.S. and around the world.
A visual representation can have more impact than words or numbers, or as a wise person once said “A picture is worth a thousand words”.
A visual map representing the thousands and thousands of ME patients in every nation, state, city and voting district can be used to show how many of a politician’s constituents are affected, and hopefully spur them to action on our behalf.
How you can help get ME represented visually:
1) Go to diseasemaps.org. The map is worldwide so anybody can participate.
2) Click on the green “Join” button.
3) Select your account type, such as “Affected” or “Family/friend”.
4) Join with Google, Facebook or email. You can can protect your privacy by using anonymous or just your first name. Your full name is not required.
5) On your profile page, click on the green “Add Location” button. Follow the instructions to get on a map. To protect your privacy, don’t use your home address but do select a public location near your home, such as a school, library or park.
6) The app will return to your profile page. Now click on the green “Join a Map” button.
7) On the Find a Disease or Condition page, use the category “Chronic Fatigue Syndrome/ M.E.”. Click the green “Join the Map” button. It is possible to be on more than one disease map by using the orange “Join Other Maps” button on your profile page.
8) To view the map, go to the diseasemaps.org homepage and search for “Chronic Fatigue Syndrome/ ME”. You can zoom in to see your marker on the map, and others in your area.
Note: In regard to the mixing of ME and CFS on this map, we have given it consideration. Diseasemaps.org only offers a CFS/ME map (an advocate was able to get ME added to the CFS map title). It is possible to make a comment saying you have ME under the “your story” section.
The numbers for ME can be extrapolated from a CFS heavy map. See MEadvocacy’s blog “What Does a True ME Definition Look Like” showing that 65% of those diagnosed with CFS have ME. Therefore, we feel that one combined map is acceptable at this time.