- Messages
- 36
@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/
@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