Put Yourself on the ME/CFS and/or Fibromyalgia Disease Maps

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Have ME/CFS or FM? Be Proud! Put yourself on “The Disease Map” and demonstrate that these “invisible” and poorly supported diseases are everywhere. Thus far 1768 FM patients and 1104 ME/CFS patients have put themselves on the World Disease Map.

[bimg=fright|no-lightbox]http://www.cortjohnson.org/wp-content/uploads/2016/04/People-World.jpg[/bimg]That’s more than rheumatoid arthritis (640) and way more than migraine (0!). That the MS and diabetes maps have only a bit more (1760, 1921) people suggests that we could, without too much trouble, have one of the most populated maps of all.
Mark C has been getting the word out about the map. He suggests that the map is

A very easy, low cost way to build high visibility for ME/CFS is to have every person put themselves on the http://www.diseasemaps.org website, perhaps using initials or pseudonym and putting exact location at some neutral school or park within a km of your home, not giving your exact address.

1000 ME/CFS patients are on the map & if we get 10,000, then 100,000, ME/CFS could become one of the most visible diseases of 435 diseases that are mapped, and then be easy to show to HHS, NIH, CDC, FDA, Congress, senate, country, state health officials, HMOs, Rotaries, Philanthropists, donors. etc that ME/CFS patients are everywhere.

The dieseasemaps.org site can also list organizations, such as OpenMedicineFoundation.org is now listed, and also key centers or physicians. We cannot expect funding if hidden in the closet, so time to come out and ACT UP to Cure M.E. worldwide. You do need to create a login and be sure to archive your username and password since you might want to change later. You can also put your own comments or story in. Single time petitions and protests are fine, but putting yourself on the map will be even more enduring and perhaps influential.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
And one more now added from Wales. Great idea. Our local support group faded long ago, so may be a good way to form a local group to offer mutual support.
Absolutely you can do a lot with something like this.
 

Merry

Well-Known Member
Several years ago I was asked to put myself on another ME/CFS map. Maybe the same website. The instructions for that one were to enter the location where I first became ill. Do I understand correctly that for this one I'm to enter my present location?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Several years ago I was asked to put myself on another ME/CFS map. Maybe the same website. The instructions for that one were to enter the location where I first became ill. Do I understand correctly that for this one I'm to enter my present location?
That's what I did....I think that's the way to go.
 

Merry

Well-Known Member
I created an account and gave my location, but although I can see my location on a map at my profile, I don't show up on the Chronic Fatigue Syndrome ME map.

Next day: Never mind. Another member kindly helped me get on the map.
 
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