Discussion in 'Upcoming ME/CFS Events' started by Nielk, Apr 27, 2015.
I hope they post pics/video when all is said and done
Best wishes to ME Advocacy for their protest march tomorrow:
Just ME: ACT UP for ME? Proxy Marchers will give us a Voice!
Yes. It will be videotaped. Someone will be tweeting live from the march, hopefully including pictures at https://twitter.com/meadvocacy_org
Follow the Act Up for ME march in DC on twitter at #ACTUP4ME from 10 am to 12 pm EST today!
March along with the demonstrators with a twitter campaign in their support. Send a loud message to HHS. We want $250 million in funding now! Use #ACTUP4ME. Use your twitter voices!
You can also follow and post on https://www.facebook.com/MEadvocacy.org
This is happening right now.
The empty wheelchairs with photos and flowers look great - I can almost imagine I am there in my wheelchair instead of stuck in bed at home. This helps all M.E Sufferers in the world, not just in the states.
Please tweet this image to your US representatives using #ACTUP4ME so that we can see which representatives have been reached. You can find your representtives here http://www.house.gov/representatives/find/
We are 1 Million diagnosed US patients suffering from the disabling neuroimmune disease Myalgic Encephalomyelitis (ME); also know in the US as ME/CFS.
For the past 3 decades we have been neglected and marginalized. Despite the fact that the burder to the US economy for this disease is estimate at $17-24 Billion, NIH funds it at a mere $5 Million per year. This allocates $5 per patient, compared to $255 per patient for the similary burdened disease MS.
To date, there are no FDA treatments for ME patients, (never mind a cure). Most medical schools don't even have ME in their instructional curriculum. This has resulted in clinicians who are not familiar in the diagnosis or care of ME patients. The patients are left with no care, no viable treatments and no understanding from doctors.
ME patients are saying NO MORE!
We need funding of $250 Million to bring us on par with other similar diseases and to have any hope of for real biomedical research that would propel the science of this disease and FDA approved medical treatments
(transferring this above post to make it easier to cut and paste!)
Not sure who wrote this, I made a few changes, use the changes or revert to the original message, figure some differences might not make it so cookie cutter!
Here is the preliminary update for today's demonstration:
Was sharing what I could by Twitter yesterday. Well done folks. Looking forward to more pictures and stories from the day!
Video of patients at the demonstration.
Video of compilation of pictures.
You can also try a Google Site Search
Separate names with a comma.