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Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

marygelpi

marygelpi

Messages
36
Bob said:
@marygelpi, that's a really GREAT video! You're an AMAZING advocate! I think you communicated exceptionally helpful facts (e.g. the funding level for hay fever and male pattern baldness!) And I think you explained your struggle with the illness and the nature of its symptoms really helpfully. It's tough to watch you tell your story, and I'm sorry that you've struggled for so long. Thanks so much for getting the video made (i assume you had some responsibility for it being commissioned?) and thanks for sharing it with us. BTW, your doctor seems great!

Your petition is still the most successful petition I've seen in relation to ME/CFS. Thanks again for your work on it.

BTW, i thought your video deserved its own thread so I've started one here:
http://forums.phoenixrising.me/inde...n-struggles-with-the-invisible-disease.45769/
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@Bob Duude! Thank you so much. It means a lot to hear the encouragement. IT's been a long road. And that interview was actually a few months ago. We were trying to get it aired by PROTEST time in the spring but just couldn't make it happen. The really frustrating part is that he interviewed Dr. Nancy Klimas and she didn't make it into the segment! I was shocked. I asked what happened and since they had to interview through Skype, (Klimas is in Miami) they said the video quality was really bad and the other doctor was sufficient enough.THe other doc is my local doc and he IS incredible, but Klimas, come on! She's like the Mark Zuckerberg of CFS! Oh well, I am happy at least it was aired, that people and this illness are starting to be shed in a better more positive light, and that we're getting more exposure/education than ever. Gotta stay positive. I've got a few more ideas to help increase signatures and we'll see if they work. But mostly I think it's going to have to be by social media and I hate annoying friends and family on Facebook but hey, life is hard, they'll survive. :)

Thank you for starting a thread! We need to strategize on how to get 50,000 signatures by the time the next set of protests happen, which I believe is in September. We're only 12,000 away- it ain't no thang! Jk. I don't necessarily HAVE to present the petition then, there is no cutoff so far, but I think it's an appropriate time to do it, and how amazing would it be to have 50,000 names behind us! The protesters could use and scatter the papers of names hah. Anyway...I'm up for any ideas. And would appreciate all the help yall can provide in sharing this thing basically everywhere :) I know we can do it! Here it is AGAIN. I actually feel decent today so I'm going at the advocacy hard while I've got some "juice" in my system. OK, I'm off. Thank you all, talk soon.

https://www.change.org/p/increase-research-funding-for-me-cfs
 
marygelpi

marygelpi

Messages
36
marygelpi said:
@GG really? I saw at first they had that and then immediately emailed the journalist and said they had it wrong. He said they would fix it asap and they did. When you pull it up now do you still see just "CF" in the title? Let me know and I will have them take a look. I hate when people call it "CF"!!
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I got them to change it to "chronic fatigue syndrome" and explained the difference and why it was important. They changed the title pretty quickly, so yay! Now if only we could get then to use Myalgic Encephalomyelitis! I tried but the interviewer had a tough time with it We'll get there!
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
All I Want For Christmas is $100 Million Dollars

100 million dollars. I’ve never lived in a world where that figure represented an actual amountof money. I don’t think I’ve ever used it for anything more than hyperbolic effect in conversation. As in, Anthropologie is so expensive even a scarf there is like, 100 million dollars. I’m not even sure I could write out that number with confidence about how many zeros follow the number one. Unacquainted as I am, I’m learning to write and say it with total conviction, because now it does represent an actual amount of money, and I am seeking it with earnestness. Within the strange world of politics-meets-medicine, it’s no longer an absurd number. In this new context it’s become completely reasonable. In fact, some would say given the facts, it’s an exceptionally modest amount. Go figure.
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https://25pillsaday.wordpress.com/2016/12/20/all-i-want-for-christmas-is-100-million-dollars/

Petition link https://www.change.org/p/increase-research-funding-for-me-cfs/u/18479684
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
This update isn't new, but hasn't been shared here yet and is so charming:
I promised myself if the petition hit 40,000 signatures, I would record and post "The Chronic Fatigue Syndrome Song." So, a promise is a promise as they say. Fair warning, I don't play guitar. I just know how to strum on chords. So.. keep your expectations low. Anyway, thank you all again, and please keep this petition circulating. I know we can achieve this crucial change. We just have to keep at it, and keep looking forward. (...)
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Petition link: https://www.change.org/p/increase-research-funding-for-me-cfs/u/18479684
 
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knackers323

Senior Member
Messages
1,625
It's great we have 50k sigs but it's taken over 2 years?
With the amount of people effected by CFS and their friends and families, 50k seems like a very small number.
Have people been sharing this on Facebook etc?
 
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