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

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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.
Hey Jennifer,
They only ask for your address so they can verify your signature. Otherwise it's d be too easy for multiple people (or made up people) to sign using the same address and fake signatures.'I'm pretty sure you can check a box that says "do not send me change.org information" etc and their is a privacy policy as well. Hope you sign! But understand if you don't.
 
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This is astonishing - I don't even recall this being launched!

https://www.change.org/p/increase-funding-so-we-can-find-a-cure
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!
 
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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
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!
 
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@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.
Pace is next on my list.. But I sorta feel like they are slowly going down the tubes on their own wihen every scientist with decent smarts reads it and completely invalidates it. I don't think pace is going to be around (legitimately) much longer. I think retracting it from the lancet is next.. Then again, read all the feedback under the trial printed on the online Lancet-- it's all negative and disqualifying of pace. There's no way it survives.
 
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Great petition, and great result! :star::star::star::rocket::rocket::rocket:

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 Bob,
Thank you for signing.. I've been trying my hardest to post in it on every online social media group that had me/CFS/fibro in their name.. My thumbs are tired! I posted it under the "advocacy" and then "petitions" page on this site but there are no replies. Been trying to think of ways to circulate it further. Since its 3 am and my legs hurt and I can't sleep, I'm trying to think of ideas :) open to suggestion.. Thanks again for signing. This could be big for us. Woo woo!
 

Justin30

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@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.....
 
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They do, the goal post has now been moved to 35K signatures. It has about 25.5 now :)

GG
Hey GG,'
They allow as many signatures as we can get! We hit 30,000 yesterday.. Pretty cool! I say we make it to 50. After you get as many signatures as you think is "enough" to back your cause, you reach out to the decision makers and talk-- Collins and Burwell. If our signature number keeps going up, the pressure is that much more on them to make a change :) hope this helped. Thank you for signing and hope you'll share!
 
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@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.....
Hi Justin,
That's awesome, I've been doing the same. I've been diagnosed with both pots/ dysautonimia and also Lyme...and think most people with CFS probably have some form of one of those. I know with the right research we can find all the answers to the these "co-infections" and conditions.

I wore myself out posting this thing.. My mom made me take a break cause I was going wacky just trying to get it out everywhere. I guess at some point you let it go, but I can't stop! I know if some other major groups solicited it we could get huge numbers.

Thank you so much for all your help, and take a break! Don't crash yourself over it. I've teamed up with the #ME Action Committee and they are leading the protest on the 25th. Would be awesome to have a petition with really big numbers backing them :) anywah, thanks again. It's 3 am, I have got to try and go back to bed. Legs are on fire though! Agh, owell. Thanks again Justin.. Let me know if you get any traction with a group or if I can help in any way. Nice thing is, people all around the world can sign ;) ok, gnite!
 
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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.
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. But I'm also going to reach out to our governor (Bill Cassidy) who is apparently on the appropriations committee! Hoping he'll take a little interest in this- I have a contact at his office so we will see. From there, I don't know precisely. I just know it'd be nice that by the time of the protest (may 25) we will have gathered thousands of more signatures.. It's that much more impactful of our cause and validates our requests for change. This is the year people are speaking out, and I think this time we may actually be heard. I could reach out to these decision makers now but I think it may be wiser to wait until after the protest... Not sure, open to suggestion. I've never done this stuff before, I'm just a sick 31!year old who got so frustrated I wrote a campaign in tears and that was that.! So ttay tuned, and please share with friends and family :) We'll see what happens next. Ok I have seriously got to to bed. Thanks for signing :)
 

Bob

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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.
 
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dannybex

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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.
As others have said, thanks so much for putting this together @marygelpi. You indeed have done an amazing job gathering so many signatures.

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:

"Lipkin: It’s not the leadership of NIH. That’s not the problem. The problem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on."

Hope that's helpful. Thanks again for all your hard work!
 

dreampop

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@marygelpi @dannybex

Hey, I just wanted to add some context to how the NIH gets funding because I feel its important to know the details in advocating for CFS moving forward, and I think Gelpi's (great last name) petition is a great start in what should really be a concerted movement getting CFS funding to $100-300 million, which is where it's DALYs put it, and DALYs are highly correlated with NIH spending.

NIH funding is granted by congress, through a subcommittee that represents Human Health & Services, the department in which the NIH is located. The NIH makes a formal request for funding annually to this committee based on his/her assessment of needs for the coming year. Congress has the right, through legislation, of granting specific funds for a specific target. These legislated funds are factored in to the NIH Director's annual request. So Congress grants the entire budget, but only directs some of the funds through legislation. For example,

"The supplemental appropriations for FY[Fiscal Year] 1983 provided funds for PHS AIDS activities, $9.375 million of which was earmarked for NIH. This marked the first time the Congress directly appropriated money for AIDS research for NIH."

This is true of things like Diabetes, which gets a congress mandated funds through a legislative act, and any additional funds the NIH Director requests. But its also true of random things, like Anthrax, which gets $80M, because congress got scared after they were targeted. Currently, the Congressional subcommittee is planning to earmark funding for Zika virus.

However, the NIH Director can request additional funds, as he did this year in his Testimony on the Fiscal Year 2017 Budget Request before the House Committee

"To this end, the President’s [Dir. Francis Collins] FY 2017 budget request for the NIH is $33.136 billion, $825 million or 2.5 percent above the enacted FY 2016 level. This budget request reflects the President’s and the Secretary’s commitment to improving the health of the nation..."

There are two avenues, and possibly a third, then; lobbying congress or lobbying the NIH Directors. The NIH seems unwilling to grant more money for CFS and I fear if they do, it will be an increase of $5-10 million. Something, in my opinion, totally unacceptable low. They simple are going to slow for meaningful change. They also, outside of Collins, seem totally indifferent to CFS. Also to note, they seem to DESPISE patient lobbying; we learned that when Collins and Nath seemed off put by patient discussion of their upcoming in house study Also that NIH guy (Brian?) whose in here sometimes suggested they were not a fan. They want to be left alone to do things their own way, and that way isn't working for us.

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




    • 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
Democrats



    • Rosa DeLauro, Connecticut, Ranking Member
    • Lucille Roybal-Allard, California
    • Barbara Lee, California
    • Chaka Fattah, Pennsylvania
One problem is we are a splintered group, we are sick from the start so we lack the active support AIDS had; although their protests weren't more than a hundred people most of the time, they were frequent. OK, sorry if that's too much useless information.
 
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Bob

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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
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?

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




    • 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
Democrats



    • Rosa DeLauro, Connecticut, Ranking Member
    • Lucille Roybal-Allard, California
    • Barbara Lee, California
    • Chaka Fattah, Pennsylvania
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.
 
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dreampop

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@Bob

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.
 

Bob

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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.
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.