Petition update

A Final Push

Mary Gelpi
Covington, LA, United States

Jul 31, 2018 — Once again I have to begin with a THANK YOU, because we’ve made it so much further than I could have anticipated with the response to this petition. We are finally closing in on 50,000 signatures, which may seem arbitrary, but is a huge milestone in the ME/CFS community. A number is just a number, but one reason this one has stuck out is that in the domain of reaching the goals of its petitions, it has been those that have gathered 50,000 signatures or more that have had the highest success rate. In this regard, the number has some meaning behind it.

In a more significant way, this petition has always aimed to be the voice for millions who’ve been too sick to speak up or be heard, or who’ve been dismissed or silenced or considered "vexatious” in their fight for change when it comes to recognition and funding for Myalgic Encephalomyelitis. I know I’ve said it before, but when you read the comments and feedback left on the petition page, it’s easy to see the urgency and dire need for people with this disease and their families. If they/we are called militant or vexatious, I can hardly see that as an insult anyone. We are doing what we have to do to break through the echo chamber and disrupt the status quo publicly.

I have to finish printing out the rest of the names, as last time I believe we were at 45,000 and I had printed it to send to Francis Collins at the NIH in a box the size of a small prius. That box contains the petition, which was at 2,200 pages, and a separate set of pages. (roughly 450 pages) including just the feedback, stories, and pleas for help that people shared along with their signatures. I think this part of the petition speaks volumes and says it clear as day why getting this institute to step up and act with more vigor now and not later is necessary if we are to truly address the health crisis at hand.

Now that we are so close to 50,000, I’ve decided to wait and hit that number to send the petition. Using my pill bottles as packing peanuts is just a creative strategy to try and grab their attention if even the tiniest bit more. Inking out all the personal information on the hundreds of pill bottles has taken a lot of man hours, more than expected, and in the meantime our numbers climbed. I know we’ll hit that number at some point, and sooner is obviously better than later-- and it's easily within reach if we all put our heads together for a final push. Then the whole package goes. If I could send myself in the box, I would. I mean technically I fit, so it’s not totally out of the question. But I know that the petition, the patient and loved ones voices, a hand-written letter to Mr. Collins and perhaps 400 pill bottles will speak louder than I could hope to. So, one final push, and the box and its contents go.

It doesn’t mean the buck stops there. I will keep going even after reaching this goal. This petition will keep going. But for now it’s just one foot in front of the other, and doing only what I’m capable of each day. At this moment, this is the goal and the plan. I can’t know the outcome if any, but I know it can’t hurt, and throwing away this size box and its contents won't be as easy as ignoring phone calls, emails, tweets and letters--even though all of these are still vital efforts. It’s all about making relevant noise, and this is a part of that movement.

Thank you all for what you’ve done and what you’ve helped this petition become. We are very close to this 50,000 signature milestone, so I’m asking to please do what you can to help circulate it further and reach this current goal. What we’ve achieved already is incredible, and I know we will help to make the change that this crisis warrants, particularly because ME/CFS funding for the fiscal year 2018 is expected to have decreased. ( We have to keep speaking up. So, #makenoise. And as always, thank you.

With deep gratitude,
Mary, Monty and Co.

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