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Action Alert: Support A Funding Increase for ME!

Categories: All News, Featured news

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

Our champion, Senator Markey, led two requests that can increase funding for ME/CFS research!

1) Requesting $9.9 million for ME/CFS programs at the Centers for Disease Control
(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.

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) Quick and Simple: Email your Senators using our online tool
B) One Step More: follow up with phone calls after Step A
C) Email the Office Directly: if you have participated in a meeting (either in-person, by phone, or virtually) with your Senator or her/his staff, please email your staff contact, if possible

A) Quick and Simple

1. Send a Message Online

Click the link below and use our form to send a message to your Senators.

Contact 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:

Email senators TODAY to support appropriations actions for increased funding for ME. I just urged my senators to sign! You can too! #CongressFight4ME #pwME #MyalgicE #mecfs https://act.meaction.net/page/11376/action/1?ea.tracking.id=facebook

Share on Twitter:

“TAKE ACTION NOW! Email senators to support appropriations actions for increased funding for ME. I just urged my senators to sign! You can too! #CongressFight4ME #pwME #MyalgicE #mecfs https://act.meaction.net/page/11376/action/1?ea.tracking.id=twitter”

 

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

B. One More Step

Note: Before beginning “One Step More” or “Email the Office Directly” Advocacy Actions, take a moment to review this Preparation Guide.

Call Your Senators

Even if you have already emailed 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 zip code {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 zip code {your zip code}. I am calling to ask your office to please contact the Senate Appropriations Committee staff and communicate your 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.

C. Email the Office Directly:

These actions are recommended for 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 emails, notes, and cards to find the name and email 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. Email 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 emails below:

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

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 XXXX joined us by signing the 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 email:

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 requests 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 email:

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 requests 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 email 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 email. 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 email.

Sample Follow-up Staff email:

Hello again [STAFF NAME},

I am just circling back regarding my email 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 Labor-HHS ME/CFS Request Language

Senate Defense ME/CFS Request Language 

Senate Resolution 225, “Supporting the goals of International ME/CFS Awareness Day” 

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

Categories: All News, Featured news

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