#MillionsMissing Visibility Action: Eau Claire, Wisconsin
#MillionsMissing is a global campaign for ME health equality. Help us make noise on May 12th, 2019 by joining our Visibility Action in Eau Claire!
Here's what I posted on Facebook earlier.
Once again people with myalgic encephalomyelitis (ME) will be demonstrating to raise awareness of our disease and the neglect patients with it receive from the federal government.
Although ME has been known in the US since the early 80's there is still no cause, no treatment, and no cure.
I am doing better thanks to my Buddhist practice and many dietary and lifestyle changes I've made in the 12 years since my diagnosis. Sadly, there still are thousands of other people who are in the "living death" where I once was--forced to remain in bed, unable to bear bright lights, noise or even the simplest communication, and with no interest in food or anything else needed for survival.
I don't know what the three people in Eau Claire that I know have ME will be doing this year. I will be on retreat doing a karma purification practice.
However, we have a week-long window starting May 6th in which to raise awareness and push for health equality.
Sadly, one of the largest health providers, Mayo, still holds on to a discredited study that actually makes our disease worse. Last year people with ME from Minnesota met with the head of the department but he was not swayed from his opinion despite being presented with new research and retraction of the study because it was flawed.
None of the three people I know with ME in the city of Eau Claire can participate outside of their home this year.
Please contact me if you are interested in joining our movement or if you have questions.