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ME Action - 21st Century Cures Act - New Action Alert - Help needed AK, KS, KY, LA, MI, NJ, WY

Bob

Senior Member
Messages
16,455
Location
England (south coast)
ME Action - LOBBY CONGRESS FOR NIH FUNDING - New Action Alert

Help us get ME in the 21st Century Cures Act.

August 17, 2015
http://www.meaction.net/2015/08/17/lobby-congress-for-nih-funding/

"A quick-strike lobbying campaign to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health."

ME Action said:
LOBBY CONGRESS FOR NIH FUNDING
#MEAction recently launched as an online platform to help anyone become an advocate.

Now we are announcing our own advocacy action: A quick-strike lobbying campaign to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health.

We launched this effort to capitalize on the 21st Century Cures Act, which would give the NIH an extra $8.75 billion over five years. The House of Representatives passed the bill earlier this summer, and the Senate is now considering the bill.Currently, the NIH allocates just $5 million per year of its $31.3 billion budget to study ME/CFS.

This moment is crucial – key senators on the HELP committee can add provisions to the bill before they vote.


WE'RE ASKING THE US SENATE FOR FUNDING EQUALITY
To that end, we have retained a well-connected consultant who previously worked for the Senate Finance Committee and helped pass key provisions of the Affordable Care Act. This consultant is now meeting with important Senate staffers, and patient advocates are calling into those meetings to present our two-point “ask”:

  • NIH will establish authority for researching ME/CFS within the National Institute of Neurological Disorders and Stroke (NINDS).
  • NINDS will establish an intramural and extramural ME/CFS program, funded at levels comparable to illnesses with similar patient numbers and economic cost to society.
Getting this language written into law would be a major victory for ME/CFS patients and allies. Our early experience suggests that key Senate staffers are open to this message. There’s a lot of work still to be done, and the outcome is uncertain. But one thing is certain: We will make progress by repeatedly sending this consistent message to Congress.

You can download our “one-pager” that we are using the present our case here.

HELP US IN KEY STATES
We still need help from patient advocates willing and able to call into 30-minute meetings on Capitol Hill from the following states and Congressional districts:

  • Alaska (all)
  • Kansas (all)
  • Kentucky (all)
  • Louisiana (all)
  • Michigan (Midland, Saginaw Township, Mount Pleasant, Owosso, Thomas Township, Bridgeport Township, Big Rapids and Alma)
  • New Jersey (New Brunswick, Perth Amboy, Sayreville, Piscataway and Asbury Park)
  • Wyoming (all)
If you live in any of those locations and would like to join the effort, please sign up here.

No matter where you live, sign the US funding equality petition and help us take the petition to the streets.

DONATE TODAY
In the coming weeks, we will be enlisting the entire community’s help to speak to Congress in one, loud voice through a coordinated campaign. In the meantime, we need your help to make this endeavor a success. The huge lobbying efforts for Alzheimer disease, Parkinson disease, and other major diseases spend millions of dollars each year trying to reach Congress.

Please donate today. Consider making it a recurring donation. Your contribution, no matter how small, will help us bring the future here faster.
 
Last edited:

Sasha

Fine, thank you
Messages
17,863
Location
UK
Oops - didn't see your post and I just posted a new thread (which I've just asked the mods to delete).

Could I ask you, @Bob, to change your title to something like:

#MEAction quick-strike 21st century cures campaign: help needed AK, KS, KY, LA, MI, NJ, WY

This is a new action today - not the funding equality petition that we've all been signing since May 12th, and I think it's going to confuse people if we don't make it really clear.

http://www.meaction.net/2015/08/17/lobby-congress-for-nih-funding/

Get cracking, if you live in those states and can help - this is an unusual and exciting opportunity where we seem to have a foot in the door already - #MEAction have retained a consultant so there are boots on the ground.
 

Rooney

Senior Member
Messages
185
Location
SE USA
Michigan and New Jersey are two of our most populous states, so recruitment there should be easy.
I'm wondering how the other states are doing recruiting volunteers.
 

catly

Senior Member
Messages
284
Location
outside of NYC
All I can say is YIPEE! I've been following 21st century cures for over a year now saying to myself--this is the perfect opportunity for ME, ME/CFS, SEID--whatever you want to call it--where are the advocates? I'm so glad someone is finally taking the lead. Unfortunately I don't live in any of the key states but you can count me in for other support!
 

searcher

Senior Member
Messages
567
Location
SF Bay Area
Michigan and New Jersey are two of our most populous states, so recruitment there should be easy.
I'm wondering how the other states are doing recruiting volunteers.
We got a great response from a patient in Louisiana. The main challenge in Michigan and New Jersey is finding a patient or ally in the specific House districts, whereas the other states are not limited since we are contacting Senators. That said, we should be ok with people from nearby.

If only we could find someone from Alaska... Although I'd prefer to find out that everyone is healthy there :)
 

Rooney

Senior Member
Messages
185
Location
SE USA
We got a great response from a patient in Louisiana. The main challenge in Michigan and New Jersey is finding a patient or ally in the specific House districts, whereas the other states are not limited since we are contacting Senators. That said, we should be ok with people from nearby.

If only we could find someone from Alaska... Although I'd prefer to find out that everyone is healthy there :)
The Senate subcommittee Chair on Primary Health is from Alaska, Sen. Michael Enzi. That is the most influential office/has most power to write us into the bill. I have the impression these key Senate offices are receptive to us.
Question? Couldn't one or two of our well-spoken leaders get a phone appointment with Enzi's Legislative Aid on this bill no matter their state?
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
I was asked by ME Action to lobby Sen. Mikulski (from my home state Maryland). The lobbyist and I decided to go to the Capitol in person to increase our impact and we met with one of Mikulski's legislative aides. It went OK, her aide was very polite and talked with us for 45 min. I gave her some background on the disease as well as my personal story and the lobbyist and I clearly laid out ME Action's two requests.

Mikulski's aide told us that since the Senate is not just voting on or modifying the House's 21st Century Cures Act but developing their own then this process could take until the end of the year or even longer. I certainly hope they remember this effort when they deliberate the legislation in committee during this session.