URGENT ACTION ALERT: SUPPORT A FUNDING INCREASE FOR ME/CFS!June 6, 2019

We need YOU to contact your Senators. Your voice makes all the difference.

Our champion, Senator Markey, led two requests with 18 other Senators from both parties. These requests, if approved, can increase funding for ME/CFS research and education!

1) Requesting $9.9 million for ME/CFS programs at the CDC
(Labor, Health and Human Services, and Education Subcommittee)

2) Adding ME/CFS to the Peer-Reviewed Medical Research Program
(Defense Subcommittee)

Please contact your Senators ASAP and ask them to support these efforts.

June 2019 Senate Funding Increase Advocacy Guide

Please note: For this action, we’ve outlined different advocacy approaches, depending on your health, time, and prior advocacy actions. Here’s the guide for you to choose from:

A. Beginner – for beginners and/or those with limited time/capacity: messaging your Senators

B. Intermediate: following up with phone calls and/or faxed messages

C. Advanced: if you have participated in a meeting (either in-person, by phone, or virtually) with your Senator or her/his staff.

 

A. Beginner Advocacy Actions

1. Send a Message Online

Use our form to send a message to your Senators.

2. Share With Others!

Share this action with your friends, family, and social media followers. They can use the same easy tool to send a message to their Senators.

Post on Facebook Here

Share on Twitter here

Share this link here: https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00066

We need as many voices as possible. Together, we are strong!

B. Intermediate Advocacy Actions

Note: Before beginning Intermediate or Advanced Advocacy Actions, take a moment to review this Preparation Guide.

1. Call Your Senators

Even if you have already e-mailed and posted on social media, nothing beats an old fashioned phone call. Given the high volume of calls lately, be prepared to make several attempts before your call goes through. You will need to make TWO phone calls, one to each of the Senators from your state.

Go here to FIND YOUR SENATORS’ phone number (requires Adobe Flash)http://www.senate.gov/states/

Identify the phone number for the Washington DC office. Take a moment to note if your Senator is listed as supporter in the Preparation Guide.

If your Senator is listed as a “SUPPORTER” in the Preparation Guide, use the script labeled “SUPPORTER” below to make your call.

If your Senator is not listed, use the script labeled “GENERAL” below to make your call.

SUPPORTER – Sample Call or Voicemail:

Hello, my name is {your name} and I am calling from {city}, {state} in {your zip code}. I wish to again say “Thank you!” to Senator {NAME} for supporting our Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) appropriations requests this year.

There is one additional thing that Senator [NAME] can do to help. Please contact the Senate Appropriations Committee staff and communicate your support for ME/CFS.

When your team speaks with Labor-HHS Subcommittee staff, please express your office’s support for funding ME/CFS programs at the CDC at $9.9 million and for the accompanying report language.

Please also contact the Senate Defense Appropriations Subcommittee staff to inquire about the state of the Peer Reviewed Medical Research Program (PRMRP). We feel this program supports innovation in the biomedical research field and request that ME/CFS is added to the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).

Thank you so much for your efforts on behalf of over a million Americans with ME/CFS.

GENERAL – Sample Call or Voicemail:

Hello, my name is {your name} and I am calling from {city}, {state} in {your zip code}. I am calling to ask your office to please contact the Senate Appropriations Committee staff and communicate their support for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

When your team speaks with Labor-HHS Subcommittee staff, please express your office’s interest for funding ME/CFS programs at the CDC at $9.9 million and for the accompanying report language.

Please also contact the Senate Defense Appropriations Subcommittee staff to inquire about the state of the Peer Reviewed Medical Research Program (PRMRP). We feel this program supports innovation in the biomedical research field and request that ME/CFS is added to the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).

Thank you so much for taking this action for over a million Americans with ME/CFS.

**Remember** You can call again, if your energy allows. Feel free to make these calls as often as once per day.

2. Fax Your Senators

Another strategy you can use to make your voice heard, especially when phone lines are busy, is a fax. When you send a fax, you can also send printouts of the letters, articles, or pictures as attachments to your fax. There’s a list of “optional attachments” at the bottom of this webpage.

You will need to send TWO faxes, one to each of the Senators from your state.

Go here to FIND YOUR SENATORS’ fax number (requires Adobe Flash)http://www.senate.gov/states/

Identify the fax number for the Washington DC office. Take a moment to note if your Senator is listed as supporter in the Preparation Guide.

If your Senator is listed as a “SUPPORTER” in the Preparation Guide, use the sample note labeled “SUPPORTER” below to write your fax.

If your Senator is not listed in the Preparation Guide, use the sample note labeled “GENERAL” below to write your fax. 

SUPPORTER – Sample fax note:

Dear Senator [NAME],

I wish to again thank you and your whole team for supporting our ME/CFS appropriations requests this year. ME/CFS impacts me and my family personally and we are so grateful for your efforts on our behalf.

I wanted to share some great news that happened just recently – S. Res 225 in support of International ME/CFS Awareness Day passed the U.S. Senate unanimously! The bipartisan resolution was jointly led by Senators Markey and Collins.

There is one additional thing that Senator [NAME] can do to help. Please contact the Senate Appropriations Labor-HHS Subcommittee staff and communicate your support for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It is vital to assure that your request letter has been seen and is being considered by Committee and Subcommittee staff on both sides of the aisle.

I hope your office will also connect with the Defense Subcommittee staff to inquire about continued funding for the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). The House version of the Defense Appropriations Bill defunds this program and I hope you will inquire about the fate of ME/CFS in the PRMRP if this program is also defunded in the Senate.

Again, thank you so much for your continued support and taking this small action to bolster your request on behalf of over one million Americans with ME/CFS.

Sincerely,

Your Name
Your Address
Your relationship to ME/CFS


GENERAL – Sample fax note:

Dear Senator [NAME],

I am writing to ask your office to please contact the Senate Appropriations Committee staff and communicate your interest and support for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

As you may know, ME/CFS is a chronic, complex, multi-system disease costing our economy an estimated $17 to $24 billion each year. ME/CFS goes undiagnosed in about 90 percent of patients.

As a constituent impacted by this devastating illness, I care deeply about improving and accelerating the government response that has been called “America’s Hidden Health Crisis” by the Centers for Disease Control and Prevention (CDC). In fact, the U.S. Senate unanimously passed Senate Resolution 225, “Supporting the goals of International ME/CFS Awareness Day” just last month, demonstrating the impact and reach of this emerging issue.

Nineteen (19) of your Senate colleagues — from both parties — requested that the Labor-HHS Subcommittee support a funding level of $9.9 million for ME/CFS programs at the CDC and accompanying report language. I am asking your office to contact the Subcommittee staff about this request.

Increased funding would allow the CDC to continue existing ME/CFS programs as well as conduct an epidemiological study, improve medical education on ME/CFS, and develop an Extension for Community Health Outcomes (ECHO) program for ME/CFS.

I hope your office will also connect with the Defense Subcommittee staff to inquire about continued funding for the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). We feel this program supports innovation in the biomedical research field and request that ME/CFS is added to the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).

Much needed funding, focused research, reliable data, and improved medical education will strengthen support for and improve the lives ME/CFS patients across the country.  We hope you will help us solve this crisis by discussing it with colleagues and Appropriations Committee staff as part of the Senate Appropriations process for Fiscal Year 2020.

Sincerely,

Your Name
Your Address
Your relationship to ME/CFS

C. Advanced Advocacy Actions

These actions are recommended for our Advanced Advocates, individuals who have previously participated in a meeting (either in-person, by phone, or virtually) with their Senator or their staff.

Dig through those old e-mails, notes, and cards to find the name and e-mail address for the staff member that you have connected with previously. (If you cannot find their name or contact information, call you Senator’s DC office and request the name and contact information for the health or appropriations staffer.) If you can, take note of the day you met or spoke with them and take a moment to remember something unique about that meeting or conversation.

When you reconnect with your Senate office contact, you can also send printouts of the letters, relevant articles, or your pictures as attachments to your email. There’s a list of “optional attachments” at the bottom of this webpage.

If you have contacts in both of your Senator’s offices, please repeat these actions for each of them.

1. E-mail Your Contact

Take a moment to note if your Senator is listed as supporter of the appropriations requests or is a member of the Senate Appropriations Committee. Then choose one of the three sample e-mails below:

  • If your Senator is listed as a “SUPPORTER” in the Preparation Guide, use the sample e-mail labeled “SUPPORTER” below to write your message.
  • If your Senator is a member of the Senate Appropriations Committee, use the sample e-mail “COMMITTEE MEMBER.”
    • NOTE: If your Senator is both a “SUPPORTER” and a “COMMITTEE MEMBER,” use the “SUPPORTER” sample e-mail.
  • For all other Senators, use the sample e-mail labeled “GENERAL” below to write your message.

You may also like to attach the “Optional Attachments” files at the bottom of this page.

 

SUPPORTER – Sample Staff e-mail:

Dear [STAFF NAME},

Thank you again for speaking with me about ME/CFS on [DATE]. I especially enjoyed our conversation about [SPECIFIC ITEM YOU SPOKE ABOUT]. Again, I cannot express how thrilled I am that Senator {SENATOR’S LAST NAME} joined us by signing our appropriations request letters for FY20.

As you know, the Senate Appropriations Committees are currently considering many requests. I know the Senator cares deeply about ME/CFS. It would be wonderful if you could contact the Subcommittee staff for more information about the status of these requests, particularly the $4.5m increase for ME/CFS programs at the CDC. This funding increase would allow the CDC to continue existing ME/CFS programs as well as conduct an epidemiological study, improve medical education on ME/CFS, and develop an Extension for Community Health Outcomes (ECHO) program for ME/CFS.

I hope your office will also connect with the Defense Subcommittee staff to inquire about continued funding for the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). Since the House defunded this program, we are very interested in the Senate Committee’s thoughts about the program’s future and if ME/CFS may be a part of it in the future. Any insight would be incredibly helpful!

Thank you again for hard work and time on behalf of so many in our state who suffer with this terrible disease.

Sincerely,

NAME
CONTACT INFO
AFFILIATION (if any)

 

COMMITTEE MEMBER – Sample Staff e-mail:

Dear [STAFF NAME},

Thank you again for speaking with me about ME/CFS on [DATE]. I especially enjoyed our conversation about [SPECIFIC ITEM YOU SPOKE ABOUT]. Your insight and experience was so helpful and I am so grateful for you to pass along our stories and interest to Senator {NAME}.

I wanted to share some great news that happened just recently – S. Res 225 in support of International ME/CFS Awareness Day passed the Senate unanimously! The bipartisan resolution was jointly led by Senators Markey and Collins.

It would be wonderful if you could share this resolution with the Labor-HHS Subcommittee staff to demonstrate the Senate’s interest and support of ME/CFS research. As you may know, the Subcommittee is currently reviewing a request made by 19 of your colleagues – from both parties – to increase funding for ME/CFS programs at the CDC. This $4.5m funding increase would allow the CDC to conduct a national epidemiological study of ME/CFS, improve medical education on ME/CFS, and develop an Extension for Community Health Outcomes (ECHO) program for ME/CFS healthcare providers in rural areas.

I hope your office will also share S. Res 225 with the Defense Subcommittee staff and inquire about continued funding for the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). Since the House defunded this program, we are very interested in the Senate Committee’s thoughts about the program’s future and if ME/CFS may be a part of it in the future. Any insight would be incredibly helpful!

Thank you again for hard work and making this inquiries on behalf of so many in our state who suffer with this terrible disease.

Sincerely,

NAME
CONTACT INFO
AFFILIATION (if any)

 

GENERAL – Sample Staff e-mail:

Dear [STAFF NAME},

Thank you again for speaking with me about ME/CFS on [DATE]. I especially enjoyed our conversation about [SPECIFIC ITEM YOU SPOKE ABOUT]. Your insight and experience was so helpful and I am so grateful for you to pass along our stories and interest to Senator {NAME}.

I wanted to share some great news that happened just recently – S. Res 225 in support of International ME/CFS Awareness Day passed the Senate unanimously! The bipartisan resolution was jointly led by Senators Markey and Collins.

As you may know, the Senate Labor-HHS Subcommittee is currently reviewing a request made by 19 of your colleagues – from both parties – to increase funding for ME/CFS programs at the CDC. This $4.5m funding increase would allow the CDC to conduct a national epidemiological study of ME/CFS, improve medical education on ME/CFS, and develop an Extension for Community Health Outcomes (ECHO) program for ME/CFS healthcare providers in rural areas. It would mean so much to our ME/CFS Community in {YOUR STATE} if you could contact the Subcommittee staff to inquire about this request and share S. Res 225 with them.

I hope your office will also share this great news with the Defense Subcommittee staff and inquire about continued funding for the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). Since the House defunded this program, we are very interested in the Senate Committee’s thoughts about the program’s future and if ME/CFS may be a part of it in the future. Any insight would be incredibly helpful!

Thank you again for hard work and making this inquiries on behalf of so many in our state who suffer with this terrible disease.

Sincerely,

NAME
CONTACT INFO
AFFILIATION (if any)

2. Follow-up, Follow-up, Follow-up!

You may not hear back from your Senator’s staff member and that’s ok! If you do not hear a reply in one week (about 5 business days), resend or forward your original e-mail and ask for a status update for your request.

You can also call your Senator’s office to ask about the status of a reply to your e-mail. Always be polite and understanding when you speak to staff about your request. Make sure to be clear about the name and job title of the person you are trying to reach.

Go here to FIND YOUR SENATORS’ phone number (requires Adobe Flash): http://www.senate.gov/states/

Don’t be surprised if the staff member you are trying to reach is no longer working there. Turnover is very common and frequent in Senate offices. If this happens to you, ask to speak to the staff member who is currently working in that person’s position and send them the same e-mail.

 

Sample Follow-up Staff e-mail:

Hello again [STAFF NAME},

I am just circling back regarding my e-mail below. Have you had the opportunity to connect with committee staff?

Very excited to hear any updates when you have them.

Sincerely,

NAME
CONTACT INFO
AFFILIATION (if any)

 

*********************

Optional Attachments:

Senate Resolution 255, “Supporting the goals of International ME/CFS Awareness Day”

“Why ME/CFS Matters for Defense & the Peer-Reviewed Medical Research Program”

Senate Request Language – Labor-HHS Subcommittee

Senate Request Language – Defense Subcommittee

*******************