Petition update

Here's What 45,000 Signatures Looks Like, And a Way To Contribute To MECFS Science (While We Wait)

Mary Gelpi
Covington, LA, United States

May 7, 2018 — Hey yall,
I realize my last update like usual was way too long ago and also included a lot of me..crying? Jeesh! Get it together Mary. It was a tough year, but hey, it’s always tough. Time to fuel some optimism, and there are many reasons to be hopeful.

We’ve hit some major milestones between now and then in the advocacy world—including the 45,000 signature mark here! As always, I’m humbled, grateful and surprised by what we’ve been able to accomplish. I hope you feel my gratitude gleaming through your smart phone device. Anyway, we are in full advocacy mode, and while now having three sick people in the family has upped our pissed-offedness at this disease and its lack of research and answers, we are trying our best to fuel easily bitter feelings into action. Our determination to make the change we and millions of others have been waiting on for decades has only grown, and it turns out there’s a very easy and effective way you can help while we wait for the gov’t. No pressure NIH, no pressure at all.

A brief FYI, this petition will now be sent in paper form to the NIH in a box the size of a car (remember paper?!) With signatures alone, this puppy prints out at just over 2,000 pages. Zoinks! It only jammed my friend Matt’s printer 14 times. I’ll show you the video of how this petition is being sent to the NIH in the next update, and hopefully it will do just what is intended, which is to make an impact, to not be easily ignored or dismissed, to open and continue dialogue, and actually land into the hands of people so they can see the urgency of this health crisis, or even recognize it as one at all. I’ve also printed out a format of the petition that include all the stories and feedback that people have left on the comments section, which undoubtedly helps give this movement an even louder and more urgent, honest voice. (A separate stack of just over 470 pages) So thank you again for signing and especially for sharing your personal stories, pleas or simple support—I really do believe it will all, somehow, make a difference.

Since you were kind enough to sign the petition, I want to make sure you know about the work being done by the Open Medicine Foundation, an amazing organization leading research to find biomarkers and treatments for ME/CFS. People have asked in the past how they can help, but back then I was just a little tot entering the advocacy world and didn’t know enough to name the best way someone might contribute to the movement. I believe the OMF is one of the most immediate ways someone might help progress MECFS science. They are an organization made of incredible researchers, scientists, doctors and advocates, working purely off charity and donations. 100% of every dime given to the OMF is poured straight into research initiatives, studies, and finishing trials that, due to lack of government funding, have had to sit unfinished on the back burner.

Incredibly the OMF have raised $13 million since 2012 and are funding multiple research initiatives, including the Stanford ME/CFS Collaborative Research Center. But as usual, there is so much more to do. There are many incredible advocacy groups out there doing amazing work and I encourage helping out any and all of them. The OMF is the only one I know of however, where 100% of donations go straight to the science and research, and that’s what we are in most desperate need of.

I wanted to be sure you know about the OMF because I believe their work and incredibly dedicated group that makes up the organization represents our best hope to end ME/CFS and get our millions of missing lives back. I am including a link to the Gelpi donation page, but you can donate to the general pot too—it all goes to the same place. Like always, no donation is too small, and we are incredibly grateful for anything you are able to give.

Thanks again for signing the petition, which is still open and still happily accepting signatures :) We are making a real difference by speaking up and making our voices heard, one way or another. I’ve always been decent at “making a lot of noise”, according to my mom, and now I’m hoping that noise can be channeled into some kind of effective, long awaited change, and I have more hope than ever we are capable of achieving it.

Keep on Keeping On,

Mary, Monty & Co #MakeNoise

To donate in the name of a Gelpi to the OMF, you can use this URL, https://openmedicinefoundation.crowdchange.co/2713 or to just donate in general, this is their homepage https://www.omf.ngo. Remember, it all goes straight to the science baby. Again, thank you thank you thank you.


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