Act now! Our #MillionsMissing Round-Up

Hello, everyone! It’s only three days until the #MillionsMissing protest, so it’s time to review what’s gone on so far, and discuss what you can do to help ensure we are heard by our governments!


So, your protest has gone out into the world and is now in a dozen different locations.
Locations now include:

Click on the links above to find out more about the protest closest to you!

The first ‘crop’ of shoe packages, in Paige’s trunk — THANK YOU MAXONS FOR WORKING SO HARD TO LABEL THESE!


You may have heard that we are collecting empty shoes to represent those who cannot protest. The campaign has been wildly effective.

The last estimate for number of pairs of shoes was in the 300 – 500 range, and that’s just for the protest in D.C. Some satellite protests have chosen to send their shoes to D.C., and some are collecting their own shoes (London).

Protest Demands and Press Release:

We released the #MillionsMissing Protest Demands, with four main goals for the future of ME/CFS in the U.S.:

  1. Increase research funding and program investments for ME/CFS commensurate with the severity of the disease: $250 million per year.
  2. Accelerate clinical trials for ME/CFS (there are no current FDA-approved medications for the disease).
  3. Disseminate accurate medical education and clinical guidelines to end the spread of harmful, erroneous information about ME/CFS.
  4. Provide HHS leadership, oversight and a serious commitment to urgently address ME/CFS.

We have finished our press release to help educate the press about ME/CFS and the issues we face as a community.


Mary Gelpi has added her voice to the call to make funding for ME research commensurate with disease burden. As of this posting, she has nearly 35,000 signatures. Sign today, with easy posting to social media. Ask friends and family to sign as well. A few minutes of your time could make a huge difference!

Fact Sheet:

The fact sheet for general use is located here; for our French-Canadians, we have a French translation of some #MillionsMissing materials here.

Posters, Media, and Branding:

Located here, we have a bunch of amazing posters and logos for you to download or link to on social media, as well as the fonts we use to make all the #MillionsMissing look cohesive. One of my favorite ideas:

[IMG] …. [IMG] …. [IMG]

The person who created these is also doing something phenomenal: if you submit a photo to her and tell her what you are missing, she will create a similar image of you being erased from your own life, to be posted to Instagram. Please go here to read the details on what to send our artist. We are especially looking for photos of gentlemen, because this illness is so prevalent in women that I think at this point we may only have one or two of men. We are happy to do more lady-images, but ladies, please poke your male friends with ME/CFS for this one as well.
You can also put this filter over your profile photos:
There are really easy directions on how to do so here from your phone, or you can just use the Twibbon, which does it for you for Facebook and Twitter with the touch of a button. This is a really easy way of showing you support for the #MillionsMissing protest!

Show your support virtually:

There are a lot of ways you can support #MillionsMissing, even with a very small energy envelope. Check out the Virtual Protest today!

Send the Congressional Pack:

Send your elected representatives the Congressional Pack from the Blue Ribbon Foundation.
The Congressional Pack includes a special version of their documentary The Forgotten Plague. Learn more about the Congressional Pack here, or send a Congressional Pack now.
These may not arrive before the protest if you send one today, but carrying this out can be vital to our long-term efforts.

Order the #MillionsMissing Tee Shirt:

We’ve designed a tee to go along with the protest! Whether or not you are attending, you can purchase one at our Zazzle store.
If you’ve been holding off because Zazzle is pricey:

  • If you know that your organization would like to purchase a few shirts, you can get a significant discount… or just go in with friends.
  • Today (5/22) would be a great day to order one: Zazzle is having 15% off of everything today! Just
    enter the code: ZAZZARTDEALS at checkout in the “Promo Code/Gift Certificate” box to get this discount. This will save you over $5 per shirt!


Donate to the Protest:

This protest has grown beyond any of our wildest imaginings. If you can help, please consider donating today.

Our fundraising goals have grown as this protest has grown! If you donate, please also consider posting the donation request to friends and family you think might be interested as well. Every little bit helps!
On a personal note, I continue to be bowled over by everyone’s talent, generosity of spirit, and willingness to work hard to achieve change, especially in this particular patient population.
If I’ve left out any important developments, all I can say is that there is so much! Feel free to add additional recommendations in comments below, and thank you again to everyone for all your hard work!


3 thoughts on “Act now! Our #MillionsMissing Round-Up”

  1. Great review of everything! The ME community is doing itself proud. Also, write your elected officials and let them know you are participating and why! Send pictures of your shoes and a quick reason you are participating to your local media.

  2. Would really like the sign the petition but like many others I can get in the sign it people have said click on petition and it will take you in to sign it’s does not work I have M-E myself sorry I could not sign I tried

    1. Hi Lisa, I’m going to post the petition link here, and try again to see if it works. Are you able to at least get to the petition page? Let me know. Thank you!
      If you’re unable to click the above address, try copying and pasting it into the web address box then hitting enter. OR, copy and paste it into google, and it should take you to it from there. Let me know if there are any issues so I can fix them. Thanks again.

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