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

[Cort]

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.

• Put yourself on the ME/CFS map here
• Put yourself on the fibromyalgia map here

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.

• Put yourself on the ME/CFS map here
• Put yourself on the fibromyalgia map here

 

[Cort]

Here is the chronic fatigue syndrome disease map

https://www.diseasemaps.org/en/chronic-fatigue/

The UK has more people listed than the US!

 

[Tony L]

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.

 

[Cort]

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.

 

[Who Me?]

I'm in. Now I can stalk all my forum boyfriends. Lol

 

[Cort]

Who Me is in....The map will never the be same

 

[Who Me?]

Who Me is in....The map will never the be same

love you too @Cort

 

[Merry]

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]

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.

 

[Tony L]

I'm in. Now I can stalk all my forum boyfriends. Lol

I hadn't considered the potential risks involved!

 

[Who Me?]

I hadn't considered the potential risks involved!

Not to worry your pretty little head. (was that condescending enough lol?) I barely have the energy to walk to the bathroom so you're safe.

 

[Jon_Tradicionali]

There seems to be no other people with CFS within 500 miles of me.

 

[Merry]

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.

 

[Cort]

Not to worry your pretty little head. (was that condescending enough lol?) I barely have the energy to walk to the bathroom so you're safe.

Whew!

 

[Rachel Riggs]

I'm in. Now I can stalk all my forum boyfriends. Lol

hahhahhahaha

 

[Lissa]

There seems to be no other people with CFS within 500 miles of me.

Yeah - so far I'm the only one on the map in my state. I know there must be others around locally, but nobody else has shown up yet!

 

[Tony L]

Whew!

Hell hath no fury like............

 

[fablepd]

done ! i'm on the list

 

[Rachel Riggs]

done ! i'm on the list

Me too! As a 99 year old

 

[Cort]

Me too! As a 99 year old

You're looking good for a 99 year old!