The group ME Advocacy is asking everyone with ME to place themselves onto www.diseasemaps.org under “Chronic Fatigue Syndrome/M.E.”. This will help the “Millions missing” with this “Forgotten Plague” to be more visible, and will help people find others in their area for support, ideas and lobbying/legislation. [You can be anonymous if you prefer.]
2600 people are now listed on diseasemaps.org. WAMES is also there under organizations. Researcher, clinics or expert advisors can also add themselves.
We know a lot of people but they either do not have the energy or use a computer. Can we do this on behalf of them? Otherwise many could be missing out on being identified as ‘missing’. Miriam
I think an email is sent to their email address so they can confirm who they are, but if you have their permission to enter them and they control the info given, I can’t see why that would be a problem. Not to be allowed to take part because you are too ill to type by yourself would make a nonsense of a disease map!