Send a Special #MillionsMissing Advocacy Kit to Congress, Courtesy of the Blue Ribbon Foundation

Share on facebook
Share on twitter
Share on email

The Blue Ribbon Foundation, the non-profit that produced Forgotten Plague, is offering a way to be involved in the virtual side of the #MillionsMissing Protest on May 25th.

The board of directors has been working diligently, putting all their effort into offering a special DVD called the Congressional Pack, at cost for those who want to participate in the day of protest virtually.
What follows is a short Q&A with Ryan Prior, the Blue Ribbon Foundation executive director and co-director of Forgotten Plague.
What is the Congressional Pack?
This Congressional Pack adds a new dimension to the typical petition process: it is a physical package that will make a more dramatic impact in offices used to electronic messages. It will also come with your name attached; as you follow up with a phone call, this will help you establish a personal relationship with the office of your representative(s).
As citizens of a democracy, we have a right to petition our government for a “redress of grievances,” as described in the Bill of Rights.

Why is this important?
In the years of making and releasing Forgotten Plague, we have constantly heard from patients and families that they wanted the film in the hands of policymakers and elected officials with the power to make real change… We hear regularly from families who have given copies of the film to the representatives. One of the best examples is Liz Burlingame, one of the patients featured in the film, whose family personally handed a copy of Forgotten Plague to Rep. Tom Price, a doctor, and one of the most powerful members of the House of Representatives. This initiated a relationship with Price’s healthcare aides, and they now stay in touch regularly.
The Blue Ribbon Foundation wants to be able to scale this program in an organized fashion to reach as many elected officials as possible in a concentrated burst. With big things happening with the NIH intramural study, the #MillionsMissing protest in Washington, DC, and the May awareness month, the next 3-4 weeks are the perfect time to strike.
How can readers acquire a Congressional Pack?
Go to the Forgotten Plague website here to the Congressional Pack special offer page.
Adjust the quantity in your cart to reflect the number of DVDs you’d like to send to state representatives.
In the “Order Notes” section of the cart, list what representative(s) you’d like to send the copy to and we will take care of the rest! You’ll find this link on the product page that will allow you to find your representatives by typing in your address.
All Congressional Packs will include a packaged Forgotten Plague DVD, along with this letter that will be personally addressed to the representative:

To the Honorable [Representative Name Here],
At the #MillionsMissing protest on May 25th, ME patients all throughout the United States will be protesting at HHS offices in Washington D.C., San Francisco, and in cities all over the world.

Myalgic Encephalomyelitis (ME), (commonly known as chronic fatigue syndrome), is a chronic, degenerative neuroimmune disease that has serious immune and cardiovascular abnormalities. The quality of life of a person with ME is similar to those living with MS, AIDS, and cancer.
“The unrelenting pain, cognitive impairment and exhaustion of ME are often literally unspeakable,” says the National Alliance for Myalgic Encephalomyelitis. “Most times, ME strikes relatively quickly (within hours, days, weeks). Once active and productive children and adults are suddenly robbed of vitality, with disability ranging from completely bedridden to somewhat functional.”
The hallmark of ME is post-exertional neuroimmune exhaustion, or the worsening of symptoms on even minor exertion. Symptoms include exhaustion, muscle and/or joint pain, and severe cognitive dysfunction. Anyone can get ME at any time, it often lasts a lifetime, there’s no cure, and sometimes, it kills.  Worse, the illness can be denigrated or outright denied.

Janet Dafoe, a prominent clinical psychologist, put her career on hold to care for her son full-time; 32-year-old Whitney has one of the most severe cases of ME. “I’m in there, looking at my amazing son,” she said recently. “And I just look at him, knowing there are these people who think this isn’t a real illness. It’s like if someone were to get run over in the street, smashed to bits and bleeding, then someone saying there’s no such thing as cars.”
ME affects an estimated one million Americans, but approximately 85 percent of people could have it and not be diagnosed, according to the CDC. The National Institutes of Health currently spends about $5 million a year researching ME, about the same amount they spend on male-pattern baldness.

The NIH recently announced major new intramural and extramural programs to research ME/CFS. At the same time, bills such as the House’s 21st Century Cures Act, Sen. Susan Collins’ S.2745 and Sen. Lamar Alexander’s  S.2742 call for important increases in the budget for underfunded diseases were announced. For these reasons, advocacy, awareness and fundraising efforts conducted now for ME/CFS will be more potent than ever before.
I urge you to watch this important documentary, and become an advocate for the people who suffer from this debilitating illness in your district, and world-wide.  Please consider joining us on May 25th, and be a strong, hopeful voice for the voiceless: those of us who are missing from our work, our families, and our lives.
[Your Name Here]

[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]By using the film and the protest to build an increasingly unified front on Capitol Hill we can tell our story in a way we’ve never done before to the audience we need most.[/pullquote] The Blue Ribbon Foundation will have this offer available until May 19th, and will send out all orders on May 20th to reach the state representatives’ desks on or by May 25th, in a virtual protest. If you are not able to physically attend either of the protest sites, this is an excellent opportunity to make your voice heard.
“Real change is about engaging with the institutions in society that hold the power,” Prior added. “We need policymakers to watch a film that conveys the human struggle, scandalous politics, and world-changing science of the ME/CFS story.

Share on facebook
Share on twitter
Share on whatsapp
Share on google
Share on email

3 thoughts on “Send a Special #MillionsMissing Advocacy Kit to Congress, Courtesy of the Blue Ribbon Foundation”

  1. Hi,
    I would suggest rewording this sentence in your letter:
    “ME affects an estimated one million Americans, but approximately 85 percent of people could have it and not be diagnosed, according to the CDC. ”
    This suggests that 85% of the US populations has ME and doesn’t know it. But, what you mean is that 85% of the people who have ME don’t know it. Maybe try:
    “ME affects an estimated one million Americans, according to the CDC. Furthermore, ME is often un-diagnosed; one community survey suggested that only 15% of patients have received an accurate diagnosis.”

  2. Well said Leah, I noticed the same thing. Overall it’s a wonderful letter. Thank-you so much to everyone working so hard on behalf of those of us who want to, but are unable. ?

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Is NIH blowing another opportunity to advance ME/CFS research?

Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed

Read More »

Stanford study enrolling now

Who: Ron Davis’s lab at Stanford University is conducting a functional microbiome study in collaboration with Harvard University and Vassar College. They are looking for severely Ill, primarily bed-bound patients within the United States to participate. What: Participants will be asked to provide a one-time fecal swab which can be collected at home and sent

Read More »

“The treatment of ME has been Dickensian” – NICE’s roundtable on the ME/CFS guideline

After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.


Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Scroll to Top