On May 25th I’ll be attending the #MillionsMissing protest in front of the HHS Building on Capitol Hill.
Along with me will be Stephanie Land and Travis Preston, board members from my non-profit, the Blue Ribbon Foundation. We’ll join at least 35 others from #ME Action Network and other major national organizations on the street outside the building, right across from the Library of Congress and the Capitol Building.
Key to the name of the protest, #MillionsMissing, are the vast number of people who of course won’t be there. In their place will be hundreds of empty pairs of shoes, representing all the people who won’t be able to make it due to their profound illness.
I’m looking forward to seeing all the shoes strewn out across the pavement. It’ll be an arresting, enduring image. I believe the silence and the absence might dig deeper into the souls of the bystanders than a typical loud and boisterous protest that may be common in the nation’s capital.
For those who look more closely, simple, yet tragic messages will be written on each pair of shoes. You might see “Missing from my child’s dance recital” or “Missing from my PhD program.” Or “Missing from life.” Each message will represent a dream deferred because of a nasty, life-altering disease which the federal government has yet to take fully seriously.
We’ll have a packed week in Washington, DC. The night we arrive, we’ll be attending a screening of our film, Forgotten Plague, in Fairfax, VA. Then we’ll be up early the next morning to ride the Metro into Capitol Hill for the protest on the morning of the 25th. We plan to meet with Congressional, NIH, and/or HHS leaders on the afternoon of the protest to discuss the primary policy issues agreed upon by ME/CFS groups. The demands represent the goals of groups from not just across the nation, but globally:
1. Increased Funding and Program Investments
Funding and program investments commensurate with the disease burden
- Clinical Trials
Clinical trials to secure medical treatments for ME/CFS
- Accurate Medical Education
Replacement of misinformation with accurate medical education and clinical guidelines
- A Serious Commitment
HHS leadership, oversight and a serious commitment to urgently address ME/CFS
It can’t be said enough that ME/CFS is a disease as severe as multiple sclerosis and as common as Parkinson’s, yet it receives only $5 million annually in federal research dollars and is fully discussed in just 6% of U.S. medical schools. It is, objectively, the great under-reported medical story of our time. And every national media outlet ought to be devoting considerably more attention to it.
The Blue Ribbon Foundation has a particularly strong interest in the #MillionsMissing protest’s third objective, Medical Education. Our Blue Ribbon Fellowship program is designed to aide first-year medical students in researching ME/CFS, developing clinical expertise in diagnosing and treating it, and eventually pave the way for a new generation of doctors who will devote their careers to curing and even preventing it. We’ve had a successful first year with 3 fellows at the Institute for Neuro-Immune Medicine at Nova Southeastern University, and we’d like to be able to expand the program to more medical schools across the country. But we need significant funding to be able to do that. That’s why we’ll be watching closely at how CDC, NIH, and HHS react to the #MillionsMissing protest’s demands. More and better education is crucial for us to move forward in simply changing the culture. This in turn will make it possible to actually do the large-scale research needed to make ME/CFS treatable and curable.
We’re proud for the Blue Ribbon Foundation to be an integral part of the protest planning and the protest itself. Most importantly, we are sponsoring the Forgotten Plague Congressional Pack program, whereby some 117 individuals have signed up to send a DVD of the film to their representatives in the Congress and the Senate. We expect this number to hit 200 by May 19th, when we send the Congressional Packs for arrival by the day of the May 25th protest. They will include a letter from the constituent with the same message as the #MillionsMissing protest, both electronically and physically. The electronic letter will also include a link to watch the film digitally so that the staffers will have the option to watch the film however they see fit.
Beyond that, we’ve also got many other great things going:
–Our board member Stephanie Land is chairing the #MillionsMissing protest PR committee
–My mom, Mary Prior, also a BRF board member, is co-chairing the Atlanta satellite protest committee
–We are releasing the subtitled versions of Forgotten Plague in Spanish, Italian, Dutch, and Norwegian in time for the May 12th International Awareness Day
–We’ll likely introduce a promotion for online free viewing of the full Forgotten Plague film centered around the May 25th #MillionsMissing protests all over the world
–We have about a dozen screenings of Forgotten Plague across the US and the UK throughout the month of May
–We’ve been participating in the Undies On the Outside campaign to help raise funding for the Open Medicine Foundation, a leading research organization that has several Nobel Laureates on its Scientific Advisory Board
To get involved with the #MillionsMissing protest, click here.
To donate to the Blue Ribbon Foundation, click here.