H.R. 7057 Action Center: Funding Research for COVID-19 Subsets and ME/CFS

Updated September 8, 2020

Thank you for taking action to support this important legislation! This action center includes everything you need to contact your Representative or Senators to support this important effort to expand research and medical education about post-viral disease, COVID-19, and ME/CFS. Each action is identified by 1) amount of time, 2) level of energy required, and 3) level of advocacy experience.

Background and FAQ

What’s this all about? ME/CFS, COVID-19, and Post-Viral Diseases

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a predominantly post-viral Neuro-Immune disease. ME has developed in a subset of patients infected with SARS and other coronaviruses. ME/CFS currently has no FDA treatment or cure — leaving millions in this country disabled for life or even bedbound. Estimates show ME is responsible for up to $24 billion in lost productivity and medical costs every year, notwithstanding the devastation to people’s lives.

According to the CDC, about 35% of people infected with COVID-19 are experiencing extended and lasting symptoms; some have still not recovered. These “Long Haulers” are reporting symptoms very similar to ME/CFS and some have already been diagnosed ME/CFS. Early evidence also suggests other post-viral diseases in the heart, lungs, and brain that may be also associated COVID-19 Long Hauler community.

NOW is the time to expand research funding for these COVID-19 subsets to find answers, risk factors, and, hopefully, treatments to return millions of Americans back to health.

What is H.R. 7057?

H.R. 7057 is a bill in the House of Representatives, currently pending consideration by the House Energy and Commerce Committee.  It is also called the Understanding COVID–19 Subsets and ME/CFS Act or “U.C.S. ME/CFS Act” It was introduced by Representative Jaime Raskin on May 28, at the end of ME/CFS Awareness Month to address the predicted rise in ME/CFS diagnoses linked to increasing COVID-19 cases across the United States.

H.R. 7057 is the first-ever bill to authorize ME/CFS Research Funding in Congress!

When passed, this legislation will increase research funding at the National Institutes of Health (NIH) for the diagnosis, treatment, and risk factors of Long Haulers and Long Haulers with ME/CFS, adding an additional $60 million. Specifically, these funds will be used to:

  1. Expand existing ME/CFS research,
  2. Launch new research funding opportunities for ME/CFS, Post-Viral, and Long Hauler connections,
  3. Improve and streamline data collection, including epidemiologic information,
  4. Enable improved medical education about ME/CFS and post-viral diseases,
  5. Focus on early diagnosis, risk factors, and access to medical and social services, and
  6. Report to Congress on the NIH’s progress.

Further reading:

What should I say to my Representative? (Talking points U.S. House of Representatives)

For Representatives, the key request is “Please Co-Sponsor H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act.” After you clearly state your request, then tell your Representative (or their staff member) why you care about this important issue. Try finishing these prompts as a great way to get started.

“I care about ME/CFS because….”

“We need more ME/CFS research at NIH because….”

“In order to be diagnosed, I (or my loved one) had to …”

“I (or my loved one) has not been diagnosed because…”

“ME/CFS has cost me and my family…”

Telling your personal story about how ME/CFS touches your life is a great way to educate and communicate with your Representative. The best connection is a personal connection!

 

Here are some talking points you can use:

  • 35% of people with COVID-19 are not recovering, some “Long Haulers” are being diagnosed with ME/CFS
  • ME/CFS is a devastating illness, impacting up to 2.5 million Americans
  • 69% of people with ME/CFS are unable to work and 89% lost their job due to ME/CFS
  • H.R. 7057 is a critical first step to fast-tracking research into Long Haulers, post-viral diseases caused by COVID-19, and ME/CFS
  • The Senate Republicans proposed a $15.5 billion increase to NIH to respond to COVID. H.R. 7057 uses just 0.1% of that increase to target this important issue
  • H.R. 7057 will fast-track results for COVID-19 Long Haulers by expanding existing post-viral research into this topic, instead of building entirely new infrastructure from scratch.
  • Congress must take action now to address the predicted rise in ME/CFS diagnoses linked to COVID-19, before many Americans become permanently disabled by post-viral disease and ME/CFS.

Use these talking points to help you take the actions below.

What should I say to my Senators? (coming soon!)

On May 28, Senators Markey led thirteen bi-partisan colleagues in a request to Senate Majority Leader Mitch McConnell and Senate Minority Leader Charles Schumer to implement the policy solutions of H.R. 7057. This letter asked party leaders to include ME/CFS research and education for ME/CFS and COVID-19 Long Haulers in ANY Coronavirus relief package considered in the Senate.

Stay tuned for Senate advocacy actions on this initiative!

Further reading:

How many actions can I take? When does this action expire?

Take as many as you have energy for – Your health comes first!  Here’s some helpful tips for managing your energy and your advocacy:

  • Beginner actions can be done as frequently as once (1x) per week, a great way to practice!
  • Buddy up to take Intermediate or Advanced actions together – CC one another, split up the work and share the load.
  • Use social media at your own comfort level
  • Ask questions! We’re here to help. Drop us a line at SolveCFS@SolveCFS.org

The more supporters the better — Representatives can still co-sponsor H.R. 7057 until early December!

Phone Actions *Most Effective*

Leave a Voicemail with your Support (5 minutes – low energy - beginner)

This action is great for beginner advocates making calls after business hours. Due to the pandemic, some Congressional offices are working remotely and not currently answering phone calls. These offices are only available by voicemail.

Enter your address information into the Solve M.E. Congressional Online Messaging Tool to find your Representative’s phone number.

Call your Representative’s office and use the voicemail to leave a message. You can share your own thoughts or read the script below. Make sure to fill in the blanks with your information and speak slowly and clearly.

Hello. My name is __________ and I am calling from zip code __________. I am calling to ask my  Representative to co-sponsor H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act. It is extremely important for Congress to fund research at the NIH to understand the long term impacts of COVID-19. Some people with COVID-19 are not recovering and some people with COVID-19 have been diagnosed with ME/CFS. We must act NOW to address the predicted rise of ME/CFS cases due to COVID-19. Please co-sponsor HR 7057 today.

Speak to a Staff Member (10 minutes – low energy – beginner/intermediate)

Due to the Pandemic, some Congressional offices are working remotely and not currently answering phone calls. These offices are only available by voicemail.

Use this guide during business hours to share your thoughts with a staff member.

BEGINNER: Use the talking points to share your thoughts with an aide and make sure to say “Please ask the Representative to cosponsor H.R. 7057

INTERMEDIATE: Ask to speak to HEALTH or COVID-19 staff. If unavailable, ask to leave a voicemail. Use the talking points and prompts to share your story. Make sure to say “Please ask the Representative to cosponsor H.R. 7057

*NOTE*: If the aide suggests you send an email instead, write down the staff email address. Use the email actions below to send an email instead.

*most effective* Meet with the Health Staff Member
(45+ minutes – high energy – intermediate/advanced)

This action provides the unique opportunity to share your experiences directly with a key staff member  — a highly effective advocacy strategy! A phone meeting with a Congressional staffer typically takes between 20-30 minutes plus at least an additional 15 minutes of preparation and scheduling.

To begin the process of meeting with your Representative’s Health staff member, please contact Emily Taylor of the Solve ME/CFS Initiative by emailing ETaylor@solvecfs.org or calling (704) 364 0016 x 209. Let us know your name, Congressional district, contact information, and what days and times are best for you. Our team can handle the scheduling from there. Please also share a brief description of other communications you’ve had with your Representative, if any.

E-Mail Actions

Online Messaging Tool (3 minutes – low energy - beginner)

Ask your Representative to co-sponsor H.R. 7057 with this easy online action form. If you have the energy, add your personal message or talking points from above! Please note that *ALL* fields must be completed to ensure delivery to your elected official.

E-mail Using Your Representative’s Contact Tool (7 minutes – low energy - beginner)

Ask your Representative to Co-Sponsor H.R. 7057 by sending an email using your Rep’s webpage contact form. You can write your own email or copy and paste the sample e-mail below. You can also send a message on behalf of your loved ones in different districts (with their address and permission of course!)

Step 1: Find your Rep’s online contact form

Visit https://www.house.gov/representatives/find-your-representative

Use your zip code or address to find your district

Click the “email” button below the picture to open your Rep’s online contact form

 

 

Step 2: Fill in your information (or your loved one’s information)

    • Select “Health” or “COVID-19” if asked for a subject area
    • Double check your email is correct – forms will not work with a typo in your email address
    • If you do not wish a response, be sure to add that to your message
    • Every member’s contact form is different. Don’t hesitate to contact the member’s office by phone to ensure your message was received.

Step 3: Write your own message or Copy and Paste the email below

 

Dear Representative,

As your constituent, I am writing to request that you co-sponsor HR 7057, the Understanding COVID-19 Subsets and ME/CFS Act.

As you may know, Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a debilitating, complex multi-system disease characterized by profound fatigue, cognitive impairment, sleep disruption, autonomic dysfunction, chronic pain, and other symptoms often exacerbated by exertion. A National Academy of Medicine report found between 836,000 and 2.5 million people in the United States suffer from ME/CFS, and up to 80% of cases of ME/CFS are initiated by a viral infection, such as COVID-19.

When a severe infection like COVID-19 sweeps through the population, ME/CFS often follows. According to the CDC, about 35% of people infected with COVID-19 are experiencing extended and lasting symptoms, some have still not recovered. These “Long Haulers” are reporting symptoms very similar to ME/CFS and some have already been diagnosed ME/CFS. Early evidence also suggests other post-viral diseases in the heart, lungs, and brain that may be also associated COVID-19 Long Hauler community.

H.R. 7057 would expand and coordinate the National Institutes of Health (NIH) funding to address post-viral chronic neuroimmune diseases, including ME/CFS, in the wake of the COVID-19 pandemic. This legislation would allow the NIH to support research and data collection on diseases like ME/CFS in order to understand how best to diagnose and treat those infected, as well as to assess possible risk factors. It would additionally provide for public awareness and education campaigns to increase understanding of the disease, with an emphasis on early diagnosis.

The Understanding COVID–19 Subsets and ME/CFS Act is urgently needed to address the predicted rise in ME/CFS diagnoses linked to increasing COVID-19 cases across the country. H.R. 7057 currently has 32 bipartisan co-sponsors.

Bill text is available here: https://www.congress.gov/bill/116th-congress/house-bill/7057/text?r=1&s=2

To cosponsor H.R. 7057, please contact Martha Sanchez (martha.sanchez2@mail.house.gov) in the office of Representative Raskin.

With your leadership and support, we can take these urgent first steps to preserving the health of Americans infected with COVID-19 and ME/CFS.

Thank you,

*most effective* E-mail Your Representative’s Staff Directly (15 minutes – moderate energy - intermediate)

The best way to get your request noticed is to contact your Representative’s key staff directly.

Step 1: Find the Email for Your Representative’s Health Staff

If you already have been in contact with your Representative’s Health Staff, send a reply to their most recent email with the message below.

If you have completed the call actions (see “Phone Actions” above) and received an email address, use that email address to send the message below. In the area reserved for your personal ME/CFS connection, mention that you have already called the office.

If this is your first time contacting your Representative’s staff (or you misplaced their email address), email Emily Taylor (ETaylor@solvecfs.org) with the name of your representative or zip code and our team will identify the right staff person from our records.

Step 2: Download and Attach Rep. Raskin’s Dear Colleague Letter to Your Email

Download the PDF of Representative Raskin’s Dear Colleague Letter HERE

Or

Copy and Paste this link into your email: https://solvecfs.org/wp-content/uploads/2020/09/Dear-Colleague-HR-7057-U.C.S.-ME.CFS_-1.pdf

Step 3: Personalize and Send Your Email

Don’t forget to personalize the items inside the ((BOLD ITALIC PARAENTHSIS)) with the correct information.

TO: ((STAFF EMAIL))

CC: ETaylor@solvecfs.org

SUBJECT: Please Co-sponsor H.R. 7057: Understanding COVID-19 Subsets and ME/CFS Act

EMAIL:

Dear ((STAFF FIRST NAME)),

I am writing to request Representative ((LAST NAME))‘s co-sponsorship of H.R. 7057, the Understanding COVID-19 Subsets and ME/CFS Act. Please see attached Dear Colleague letter from the bill’s sponsor, Representative Raskin.

According to the CDC, about 35% of people infected with COVID-19 are experiencing extended and lasting symptoms, some have still not recovered. These “Long Haulers” are reporting symptoms very similar to ME/CFS and some have already been diagnosed ME/CFS. Early evidence also suggests other post-viral diseases in the heart, lungs, and brain that may be also associated COVID-19 Long Hauler community.

((ADD YOUR PERSONAL ME/CFS CONNECTION HERE. 3-4 sentences))

Because I’ve seen firsthand the damage caused by ME/CFS, I understand how urgent it is to take action now.

This legislation is a critical first step towards addressing the long-term impacts of COVID-19, especially understanding the post-viral illnesses that may follow in its wake. This legislation would expand funding from the National Institutes of Health (NIH) to research, collect data, and promote education campaigns of post-viral chronic neuroimmune diseases, including Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) or ME/CFS, in the wake of the COVID-19 pandemic.

HR 7057 was introduced by Congressman Jamie Raskin (ME-08) in June 2020 to address the rising concerns and reports about COVID-19, specifically post-viral illness and extended long-term symptoms. Please cosponsor this bill to show your support for this urgent research.

To cosponsor this legislation, please contact Ms. Martha Sanchez (martha.sanchez2@mail.house.gov) in the Office of Representative Raskin.

Thank you in advance for your time and consideration,

((Your Full Name and Contact Information))

Social Media Actions

*most effective* Message and/or Tag your Representative (7 minutes – low energy - beginner)

Your Representative and their team check social media figures DAILY. This is an action you can repeat for your own Representative and others on different social media platforms.

Step 1: Find your Targets

The National Kidney Foundation hosts an exceptional website collection of social media handles for Members of Congress. Identify the REPRESENTATIVES or SENATORS you’d like to contact which platform(s) you’d like to use.

Step 2: Post, post, post!

Here’s some samples or make your own!

    • @YOUR TARGET REP #COVID19 may trigger ME/CFS in those who recover. Support and fund post-viral disease and #MECFS research! Please COSPONSOR HR 7057. #SolveME #LongCoVID
    • Thank you @RepRaskin leading the way with the Understanding COVID-19 Subsets and ME/CFS Act, HR 7057. We need research to understand #longCOVID #MECFS and post viral diseases. We are so grateful for your support! @YOUR TARGET REP Will you cosponsor?

Encourage your friends and followers to Join You! (7 minutes – low energy - beginner)

We are stronger together! Ask your friends and followers to take action too.

TWITTER

#COVID19 is causing ME/CFS in some people. Congress must fund post-viral disease and #MECFS research! We cannot wait – too many are sick! Ask your Representative to Co-sponsor H.R. 7057 with @RepRaskin! #CongressFight4ME #covid1in20 #longhaulers #SolveMECFS
PLEASE JOIN ME – Contact your rep: https://sforce.co/3lQRF0z

FACEBOOK

Share this post: https://www.facebook.com/SolveMECFSInitiative/photos/a.74987762107/10157462143992108

Ask your friends to share:

I support HR 7057, the Understanding COVID-19 Subsets and MECFS Act. It’s a critical first step towards addressing the long-term impacts of COVID-19, especially understanding the post-viral illnesses like ME/CFS that may follow in its wake. People with #LONGCOVID already know this! Help us expand funding from the NIH to research, collect data, and promote education campaigns.

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00094

INSTAGRAM (Pick your favorite graphic!)

ACTION ALERT 📢 https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00094

#COVID19 may trigger ME/CFS in those who recover. Support and fund post-viral disease and #MECFS research!

Ask your Representative to Co-sponsor H.R. 7057
#CongressFight4ME #covid1in20 #longhaulers #SolveMECFS @repraskin #MyalgicE #pwME #spoonies #SolveME #Covid19 #HighRiskCovid19
#MECFS #chronicillness #CFS #EndMECFS #chronicfatigue #spoonie #chronicillnesswarrior #invisibleillness #CFSME #severeME #myalgicencephalomyelitis
#butyoudontlooksick #sickandtiredofbeingsickandtired #MEawareness #pwME #longCovid #covid1in20 #SolveMECFS #Covid19

Use the Solve ME/CFS Advocacy Day Twitter Tool (1 minute – low energy - beginner)

Click on the link below your favorite graphic message to tweet

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