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Act Up for ME-Boots on the Ground Walk/March on DC: April 28, 2015

Nielk

Nielk

Senior Member
Messages
6,970
http://theargusreport.com/students-to-march-to-white-house-in-support-of-me-patients/

Students to March to White House in Support of ME Patients
ME sufferers and students carrying photographs of bed-bound ME patients will march to the White House tomorrow (April 28) in a bid to raise awareness of the disease and urge the US Department of Health and Human Services (HHS) to take urgent action.

The march dubbed Boots on the Ground in DC has been organized by MEAdvocacy.org, a small voluntary grassroots organization with a mission to raise awareness for people suffering from myalgic encephalomyelitis (ME).

“We have raised funds and organized this demonstration in DC to raise awareness about the illness and to urge the HHS to properly address this severe group of patients,” MEAdvocacy volunteer, Colleen Steckel told The Argus Report this morning. She said they were also asking the NIH to increase its funding of the disease to US$250 million per annum to bring it up to par with other similarly burdened diseases.
Click to expand...
more here.
 
Nielk

Nielk

Senior Member
Messages
6,970
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!
 
justy

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
 
Nielk

Nielk

Senior Member
Messages
6,970
11069782_10153208538873426_7096524673147681091_n.jpg

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/
 
*GG*

*GG*

senior member
Messages
6,389
Location
Concord, NH
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!

GG
 
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