How many of us are out there with ME/CFS? Put yourself on the map so that we can show the world how many of us exist!
Put yourself on the map using this website: diseasemaps.org.
Simply search for Chronic Fatigue Syndrome/M.E., and then add your information. (Include name or not.) We can prove to our health agencies that we do exist! Also, you can see who is suffering with ME/CFS around you.
Urgent Action Needed: Demand NIH Fund the ME/CFS Research Roadmap!
October 10, 2024
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6 thoughts on “Put us on the map!”
We want to go from 1000 ME on map two weeks ago to 1500 today to 5000 by May 1, 10,000 by end of May.
Be sure to go to diseasemaps.org, make login, save PW since you can change later, and recommend not doing your full real name unless you are comfortable with the world knowing this forever, but perhaps like MarkC or JSmith etc so people might have better chance of knowing who is where so you can advocate locally, with a congressional rep for example.
Recommend you put your male or female symbol not at your exact address, but as nearby school or park, library etc that is public, but not a home, unless you want people to know exactly where you live (not recommended).
Recommend enabling contact via e-mail, which is hidden, so people nearby can contact you if meeting with rep or other actions, Forgotten Plague showing etc.
Asked every ME patient you know anywhere to add to this map, and add good MDs, advisors, Clinics and R&D centers, then the missing millions of people will appear, missing millions in funding will appear.
Please ask also GOOD international ME groups to join, since large portion of R&D happens overseas incl Australia, Norway Sweden, Belgium, UK, Canada, and we can use all the help we can get.
If we all row together, we can finally Solve CFS and Cure M.E.
PLEASE NOTE: ‘Chronic Fatigue Syndrome/M.E.’ …..is what comes up in the search box. Simply typing ‘CFS’ or ‘ME’ will NOT navigate you to the correct illness.
Thanks, Janine! I’ll fix this.
We need to spread awareness about ME and CFS. The stats of diseasemaps shows that 79% people with ME/CFS is not able to work.. 🙁
I have already registered. You can join the map directly in this link:
https://www.diseasemaps.org/en/chronic-fatigue/join-the-map-type/
Might create a SECOND map showing where we were when we got sick.
OpenMedicineFoundation, Solve CFS, a group in BC canada are now also listed. Suggest local organizations may also want to get listed for people to be able to join, meet, share ideas, do fundraisers and advocacy. Disease maps is very useful geographic, organizational lobby tool. Let let the missing been seen. Ask everyone affected to list and we will be much stronger and able to get our demands met.
On a local scale, just like pink ribbons are associated with breast cancer awareness, hope we can make blue ribbons representative of M.E. I have placed Blue ribbons on front porch, tree, mailbox and may “Stay Blue until they Cure M.E.”
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