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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Does anyone know what they really do with our street address? They want my street address and full name. I don't mind full name, but street address I'm not comfortable giving this to any website. I tried to read the privacy and other click on, but couldn't read through it all. I'm concerned because as it is my street address keeps coming up on the internet and I have to keep trying to get it taken off. Thank you.
Hi Justin!Bump this the top....
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!This is astonishing - I don't even recall this being launched!
https://www.change.org/p/increase-funding-so-we-can-find-a-cure
In small print below the main copy it says it'll be delivered to Francis Collins (head of NIH) and Sylvia Burell, the Secretary of Health and Human Services. I agree it should be sent to Congress, but not sure how that is done (to each member?) via these 'change.org'-type online petitions.
View attachment 15496
@Sasha I've just noticed your Tell US govt: Investigate PACE! signature. If they can bring FIFA and Volkswagen to account, why not? Should be easy enough to demonstrate how much harm PACE has caused US ME sufferers.
Hey Bob,Great petition, and great result!
This must be our community's most successful petition to date?
I was vaguely aware of it but it pretty much flew under my radar as well.
Hey GG,'They do, the goal post has now been moved to 35K signatures. It has about 25.5 now
GG
@marygelpi I have tried to reach other groups with this petition. I have been very sick as of late but groups/forums such as:
- Dyautonomia/POTS/NMH
- LYME
- MCAS
Are other areas to pursue. These groups all have a direct correlation to ME and are some are comorbidities of ME or Causes....
If you have the energy or if someone would like to take on this task I think it would helps us.
Another suggestion if you have not already done so is to contact all ME/CFS Groups Globally.
Further contacting doctors specializing in the field as well.
I want to take this one so bad but spent a lot of time promoting it when I first saw the petition and I am likely paying for it.
I hope we can make 50,000 or even 100,000 signatures.....
Does anyone know what happens with this petition ? Who does it get presented to and is there any significance placed on the no. of signatories ?
The reason I ask is because it seems that congress are the main players in determining funding, if so they are the ones that should be targeted.
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!This is astonishing - I don't even recall this being launched!
https://www.change.org/p/increase-funding-so-we-can-find-a-cure
Maybe ask this guy to sign ?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
Hey there,
So, there is no "magic number" to get to, you obviously just want to get as many signatures as possible to back your cause and put public pressure on the decision makers. Once the petition reaches a "desired" amount.. We reach out to the decision makers - Burwell and Collins. Since they are the heads of these organizations they have major power in changing around appropriations.
That's a great point. Perhaps the petition could be sent to every member of congress? I seem to think that ME Action might have a tool to do that?You might want to read this interview that was done with ME/CFS reporter Mindy Kitei and Ian Lipkin a few years ago. She too was frustrated that the NIH wasn't allocating funding for our illness, but Lipkin pointed out that it's Congress that actually makes the decisions on what the NIH spends money on, based on what they hear from the people who elected them
Some of our friends, including the Solve ME/CFS Initiative have been involved in lobbying congress and talking to the Human Health & Services subcommittee, so it may be helpful if e.g. SMCI are aware of the petition.Lobbying congress is a daunting task, and frankly, requires overwhelming effort (as in AIDS) and political targetting. Since the HHS subcommittee earmarks funding, it would seem if your going to lobby anybody, it should be those members. If they are your states reps, they will be more willing to listen, especially if you carry weight in their local communities. But, again getting that number to $100 you'd really have to do some convincing.
Labor [The HHS + Labor] Subcommittee Members
Republicans
Democrats
- Tom Cole, Oklahoma, Chairman
- Mike Simpson, Idaho
- Steve Womack, Arkansas, Vice Chair
- Chuck Fleischmann, Tennessee
- Andy Harris, MD, Maryland
- Martha Roby, Alabama
- Charlie Dent, Pennsylvania
- Scott Rigell, Virginia
- Rosa DeLauro, Connecticut, Ranking Member
- Lucille Roybal-Allard, California
- Barbara Lee, California
- Chaka Fattah, Pennsylvania
I think it all started when whichever committee were threatening to withdraw funding from the CDC's ME/CFS program, a few weeks/months ago. Carol and others arranged some emergency meetings with the appropriate committee members who said that they hadn't been lobbied about ME/CFS before, and that they welcomed it. So I think it's been a learning curve for Carol Head. She seems to be doing a great job, and just getting started. She said in the newsletter that they will continue the lobbying.Yeah, I just read that in the newsletter Carol Head met with the HHS Committee recently. Do you know how long they have been meeting/opened dialogue with the Committee? Another note is that these committee members are probably being offered a lot by other lobbyists, and I wonder if a simple visit might fall in between the cracks for them.