Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Nope, I'm in the UK and was able to sign it.is this petition only for US - citizens?
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.
@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.
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.
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.
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.
@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"!!Wish they fixed the title, comes up as CF, not CFS, which is not great, but at least be accurate!
GG
@Comet Thanks so much!! I'm happy but feel like there is so much more to do! One day at a time I guess. Next stop...calling state officials. I'm tired just thinking about it waaahhI saw the piece/interview with you via Twitter the other day - it was great! You should be really proud of yourself for doing this!
ETA: @marygelpi Forgot to hit 'reply' again again.