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

Sasha

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Been trying to think of ways to circulate it further. [...]
Mary, did you see my article a while back on how to "hijack" the comments sections of online news stories to attract attention for exactly your kind of project?

Good to try to nip in and be among the first commenting on any story. Quite a few stories have appeared in the last few days for May 12.

Here's the latest:

http://www.dailymail.co.uk/news/art...-chronic-fatigue-leaves-wheelchair-bound.html

It's a bit fiddly to register with each outlet but once that's done, it's easy to post on future stories.

If you're posting on non-US stories, I suggest making it clear that non-US people can sign, and explaining how more US research funding will help PWME all over the world, not just in the US.
 
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Mary, did you see my article a while back on how to "hijack" the comments sections of online news stories to attract attention for exactly your kind of project?

Good to try to nip in and be among the first commenting on any story. Quite a few stories have appeared in the last few days for May 12.

Here's the latest:

http://www.dailymail.co.uk/news/art...-chronic-fatigue-leaves-wheelchair-bound.html

It's a bit fiddly to register with each outlet but once that's done, it's easy to post on future stories.

If you're posting on non-US stories, I suggest making it clear that non-US people can sign, and explaining how more US research funding will help PWME all over the world, not just in the US.

Hey Sasha,
That was a great article. Thank you for sharing. I did want to mention that the local New Orleans news is doing a story on the petition, me, the illness, and what it's like living with an "invisible disease." I have no idea how it's going to turn out, but despite what's said in the interview, I think it will help just to show a very normal, healthy looking young woman (me) who is telling her story of being sick, unable to work, living with parents etc., because it helps address the whole "but you look fine" aspect of the disease. Nobody on the sidelines would suspect that I'm sick. So in that way I think it will be good (I hope) I also hope it will help boost signatures and bring awareness to the protest on Thursday which I talked about. I have no idea how long the segment will be (could be just two minutes) but they were here for two and a half hours! I guess because there's just so much to say when it comes to this disease, it never seems like there's a simple clean answer without having to address another component that goes years back.. Anyway, I really hope it's done well and that if it IS, it can be useful in telling our story and sharing a personal example of what it's really like living with this thing, behind the scenes a bit. ANYWAY, still posting it and trying to circulated the petition as we gear up for Thursday. Eek! Pretty exciting.. Thanks for the advice!
 
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@marygelpi

Hi Mary, you've truly done a magnificent job! You should be very proud of yourself! We're all totally impressed with how successful you've been and how many signatures you've managed to collect. Before this, the biggest petition I remember seeing in our community was the recent PACE trial petition (which is slightly more than 12,000 signatures at the moment). But before that I don't remember any petitions getting anywhere near that. (Perhaps some Norwegian petitions did well - I can't remember now.) So, anyway, congratulations and thank you. It's a great petition. I'm afraid I haven't got any suggestions about how to promote it further. If I think of anything then I'll let you know.

Hi Bob,
Thank you for your encouragement! I was lucky really.. Living in the time of social media and having so many different outlets in which to share it is what helped it take off. A woman who had nearly 300,000 followers on Twitter shared the petition.. And that same day it received something like 10,000 signatures.. So I think that helped a lot. The rest, I don't know. My mom says divine intervention aside from posting the crap out of it in every place it was possible :) anyway, now we have a nice chunk of signatures to show to congress and to have for the protest on Thursday.. Although I'd still like to get as many as possible before then! So I encourage y'all to keep posting.. Not over yet :) thanks again for your kind words Bob, it's easy to get discouraged with this thing but all the advocacy and work with people coming together this month has brought me a lot of hope. I think this is the beginning of real change. :)
 

Sasha

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Have you had the petition translated into other languages, @marygelpi? That could help you reach more people too.

If you wanted to do that, you could start a thread asking for translators and for help spreading it in non-English-speaking communities.
 

Jennifer J

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Mary Gelpi said:
I am only 31, and yet, everyday things like taking a bath exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic illness that causes pain and disabling symptoms, specifically severe weakness and crippling fatigue.

Before I became sick, I was able to travel in college, fall in love, enjoy SEC football and graduate. Now, just a trip to the grocery store can land me in bed for days. I take 25 pills a day just to manage the pain and symptoms of the illness.

I have lost my life as I knew it. Those of us in the ME/CFS community are used to not being taken seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the result of a lack of funding for research.

In the 2016 federal budget, only $5.4 million was allocated to the Center for Disease Control (CDC) to research the disease.

More than double that amount was spent on male-pattern baldness. We can do better. Please stand with me and the millions suffering with ME/CFS in demanding that the NIH increase the allocated funding for the research of this disease.

In the last year, the NIH has announced that they planned to dramatically increase funding for ME/CFS. Annually in the past, they have given around $5 million in research grants--far from enough. This is a positive step, but we've been promised things before and let down time and again.

I am respectfully asking the NIH to officially fulfill the promises they have made regarding ME/CFS, and to drastically up the funding allocated for research so we can finally find a cure, and at least possible treatment options in the meantime.

For now, so many sick people have no where to turn to manage their illness. Many doctors are ill-informed, and often patients have to become their own doctors. I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure.

With your signature, we can hold the NIH and congress accountable for taking our illness seriously and honoring our request to increase the CDC’s research budget to $100 million for ME/CFS funding.

#WeCanDoBetter Let's do it now.

Letter to
Director of NIH Francis Collins
Secretary of Health and Human Services Sylvia Burwell

This petition is on behalf of the 3 million extremely sick people in our country who are desperate for research, treatments, and a cure regarding ME/CFS and their associated illnesses.

We are asking that the funding allocated toward the research of this devastating disease be increased to $100 million annually in order to fund studies, find effective treatments and hopefully, ultimately, a cure for this "Invisible Disease."

I know you're the right people who can step in and make this change happen.

Together we can improve millions of lives and cease their suffering by offering a real shot at a cure and at least some honesty and validity in the meantime.

I truly thank you for your time, and I know your job isn't easy.

But this disease has spent decades in the wrong hands and been handled as though it didn't exist.

The time to come together and change all of that is now, and I look forward to what we can achieve in the near future. Thank you again.
Thank you Sasha! I started the petition about a month ago.. I've been lying in bed posting it on literally every social media site about me/CFS/fibro. I really appreciate you sharing here and I hope we can continue to build up our numbers- We hit 30,000 yesterday! But I think we should go higher to really get their attention. I wrote the petition on a really bad day-- really weak, in pain and in tears. I felt so helpless I couldn't take it anymore so I sent this out into the universe. Now, here we are and it's had a great response. But I'm always thinking bigger-- I say we get to 50,000. We can do it!
Hey guys,
So for the first one hundred emails Collins and Burwell get an email with the campaign and the attached letter with every signature. Then after that, every 100 signatures they get a "digest" email that informs them of another 100 signatures AND sends them the most recent comments on the response page-- which is pretty cool because I think the feedback from sick people has been really impactful. Even healthy people see the inequality. So that's how it works. It's not going to anyone in congress specifically right now, but I'm reaching out to our governer tomorrow, (Bill Cassidy) to see if he has any interest in helping millions of sick people :) Apparently he's on the approripirations committee so that could be another huge step. Thank y'all for signing and sharing. Let's keep it goin!
THANK YOU!!! Been trying to post everywhere!:) really appreciate it. I think if we rally we can really get our numbers up! We hit 30,000 yesterday.. I say we go for A solid 50 what do you think? Thanks again :) keep sharing, we're getting there!
31,996 signatures! @marygelpi, I'm with everyone else, you've done an amazing job! Thank you. :hug:

I sent it out to a meetup group in my area, and a couple people I thought would support this and asked them to pass it on. Mary, please don't answer if you need your energy elsewhere, I was wondering how long the petition will stay open to keep trying to get more signatures? Is Thursday the cut off?

Hi, everyone, we only need 3,004 more signatures to reach 35,000.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure

Thank you, everyone for all your efforts and work for all that is taking place. :)
 
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31,996 signatures! @marygelpi, I'm with everyone else, you've done an amazing job! Thank you. :hug:

I sent it out to a meetup group in my area, and a couple people I thought would support this and asked them to pass it on. Mary, please don't answer if you need your energy elsewhere, I was wondering how long the petition will stay open to keep trying to get more signatures? Is Thursday the cut off?

Hi, everyone, we only need 3,004 more signatures to reach 35,000.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure

Thank you, everyone for all your efforts and work for all that is taking place. :)
 
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Yo dude, fear not!! The petition is not going to close, I just thought it would be great to hit 35,000 by protest time because it's just such a solid number, isn't it? :) And it'd be great to plop a binder filled with 35,000 names of people supporting our demands for change on any policy makers desk. SO, people can still sign after Thursday, was just working hard for a final push of signatures so everyone who was protesting knew they had that many people behind them :) Thank you so much for helping to sign and spread! I think we can get there-- this is something I can do from my couch with an ice pack on my head- AMEN TO THE IPHONE. OK, I'll be around. Go forth and sign!
 
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Great work Mary! I don't use Facebook, has anybody already posted this to Linkedin? I'd be happy to share this with my network and then hopefully others will forward on to theirs.
 
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Great work Mary! I don't use Facebook, has anybody already posted this to Linkedin? I'd be happy to share this with my network and then hopefully others will forward on to theirs.
I'm actually not on LinkedIn and have not posted it there, and don't know if anyone else has. Would love if you could share it there, it's still slowly crawling upward in signatures :) I'm sending it out soon to Collins/Burwell.. But might as well get as many as possible before then. I'll post on the petition page soon the way in which in which in presenting the petition to them.. It's gonna be "impactful" and creative, I'll say that much. Also good to know, printed out, the signatures takes up more than 1,500 pages.. So that will be a great tool that anyone is welcome to use if they are sitting down with a politician or someone whose help/attention they are trying to get. Anyway that's all for now... Great work yall, keep it up :)
 
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Hey friends,
The local news here in New Orleans aired a five minute segment on ME/CFS, living with the disease, funding issues, and mentioned the petition! woo woo. I am hoping this will just help with exposure and since it is online, it can be shared anywhere. Anyone feel free to use this if it can help with any aspect of life with this illness or if you're care taking for someone, and also...we're going for 50,000 signatures! We're at 38 now, and I Know we can do it. We've come so far. I'll post the segment here if it can be of use to anyone, but pretty exciting that "Chronic Fatigue Syndrome" is being taken seriously in the media (at least in this segment) and that it's receiving long needed exposure. OK, back on the advocacy horse. Let's do this.

Here is the news segment:

http://www.fox8live.com/story/32457045/living-with-chronic-fatigue-woman-struggles-with-the-invisible-disease

And keep on trying to get this thing signed! 50 is the goal, and reaching it will make our voices even louder.

https://www.change.org/p/increase-research-funding-for-me-cfs
 
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Hey @Sasha,
This news story is from local news in New Orleans..but shines a light on CFS. Best part, no comments section underneath :) Honestly for the most part, everyone who sees it and who's signed the petition have been crazy positive and encouraging! We're now going for 50,000...final number, promise. But apparently petitions with that number do the best, and we've just worked so hard that I really want to enact this change, not just turn their heads. Anyway, here's the segment if you'd like to see it. I thought they did a pretty great job. Also it includes my dog Monty so, you know, that always helps. :) OK, talk soon. -Mary

http://www.fox8live.com/story/32457...ue-woman-struggles-with-the-invisible-disease

also this is supposed to be a reply to our convo like 5 threads up but my brain must be slow and I can't figure out commenting order. yay for me! ok bye.
 

Bob

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@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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Wish they fixed the title, comes up as CF, not CFS, which is not great, but at least be accurate!

GG
@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"!!