In his recent Address to the Joint Session of Congress and Fiscal Year 2022 Budget, President Biden called for a major investment in federal research and development to establish an agency, called the Advanced Research Projects Agency for Health (ARPA-H). Representatives DeGette and Upton have added ARPA-H into their landmark legislation, 21st Century Cures Act 2.0. Building on the successes of the previous 2016 Act with the same name, "Cures 2.0" and ARPA-H will:

• Create new research funding for non-public research separate from NIH
• Tackle big challenges (like ME/CFS) requiring large, sustained coordination and high-risk exploration
• Add an additional $25 billion for independent research institutions
• Study sources of coverage for those with COVID-triggered illnesses
• Establish a Long COVID learning collaborative
• Develop and implement a national strategy to improve pandemic response for "medically underserved populations"

 

Send a message to your Federal leaders today and ask them to support Cures 2.0 and ARPA-H!

In a recent public comment period, Solve M.E. criticized the CDC for failing to meet the guidance of Congress. A recent, potentially damaging, draft review took two years of CDC resources, but doesn’t address any of the intentions published by Congress. Congress needs to know that CDC is failing to meet its instructions to:

• “collaborate with disease experts”
• “resolve the case definition issues”
• “counter medical misinformation and stigma”

 

Send a message to your members of Congress today and ask them to ensure CDC is meeting its commitments to Congress and all Americans touched by ME/CFS.

Thanks to the hard work of Representatives Gus Bilirakis (R-FL-12) and Ben Ray Lujan (D-NM-03) and Senators Richard Burr (R-NC) and Ben Cardin (D-MD), we’ve improved the quality of medical research and reduced disparities in clinical trials at the same time!

Help us say “Thank you!” by signing our Solve ME appreciation letter

URGENT ACTION ALERT: SUPPORT A FUNDING INCREASE FOR ME/CFS!

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

Our champion, Senator Markey, is leading two requests which, if approved, can increase funding for ME/CFS research and education! These requests would bring the total ME/CFS program funding level at CDC to $15.4 million (a 300% increase in program related funding!) and ensure ME/CFS continues in the critical Department of Defense Peer-Reviewed Medical Research Program, which provided over $500,000 to ME/CFS researchers last year.

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

Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

Advocacy Starts with you! Please help millions of Long Haulers regain quality of life. Your leadership will raise awareness and help create legislative action to help with issues like: protections, treatment, workplace and income, insurance, and disability. We need you to contact your local representatives to tell them about:

1) 900+ patient-advocates taking part in Advocacy Day

2) the unique and unmet needs of Longhaulers in assessing quality medical care

3) and request their help to facilitate the road to recovery!

 

. Please take a few minutes to complete this form which will be sent directly to your local representative. 

Use the form below to send a message to your members of Congress to urge their support. 
*Don't forget the Prefix drop down box!*

URGENT ACTION ALERT: Ask your Representative to support and co-sponsor Cures 2.0!
Thanks to your dedication and advocacy efforts, key provisions from the COVID-19 Long Haulers Act (H.R. 2754) were added to Cures 2.0, bipartisan legislation introduced before Congress by Reps. Diana DeGette (D-CO) and Fred Upton (R-MI). This bill will help accelerate medical product development and bring new innovations and advances to patients who need them faster and more efficiently. 

Ask your Representatives to support and co-sponsor Cures 2.0 Today!
Post-acute sequelae of COVID-19 (PASC), or the patient-preferred term “long covid,” describes a collection of post-viral symptoms which persist even after the patient no longer tests positive for the SARS-CoV-2 virus or antibodies and impacts millions of Americans, regardless of their initial infection severity. Additionally, a recent study found that 13% of hospitalized cases of COVID-19 meet the diagnostic criteria for ME/CFS after 6 months and experts predict that ME/CFS cases in the United States will double in the next 12 months.

We must prevent history from repeating itself for another generation of ME/CFS sufferers.

For those with long covid and post-acute infectious illnesses, Cures 2.0 will deliver 1) research into the pediatric population, 2) evaluation of disparities, and 3) education and awareness programs. These programs are essential for understanding related post-viral diseases and improving access to treatment for all Long Haulers.

Cures 2.0 will also create the Advanced Research Projects Agency for Health (ARPA-H) that will transform and improve important areas of medicine and health by funding projects that could:

1. Tackle bold challenges requiring large scale, sustained coordination;
2. Create new capabilities (e.g., technologies, data resources, disease models);
3. Support high-risk exploration that could establish entirely new paradigms; and/or
4. Overcome market failures through critical solutions, including financial incentives.
5. Complement NIH’s existing research portfolio and mission and the private sector’s research initiatives.

Use the form below to send a message to your members of Congress to urge their support. 
*Don't forget the Prefix drop down box!*
 

URGENT ACTION ALERT: Ask your Representative to Co-sponsor H.R. 7057!
Ask your Representative to co-sponsor H.R. 7057 today!
When passed, this legislation will bolster ME/CFS research at the National Institutes of Health (NIH) by including an additional $60 million for existing ME/CFS research projects and expanding into connections between ME/CFS and COVID-19 survivors. It will also enable existing public education programs to include ME/CFS and post-viral disease information, with a focus on early diagnosis.

“We cannot let the number of ME/CFS cases rise due to a lack of research and understanding. As we battle the coronavirus, this critical legislation will help us respond to this ME/CFS hidden health crisis. While we are facing a monumentally dangerous public health crisis, we must take all necessary steps not only to stem the spread of COVID-19, but also to prevent and control its lasting repercussions.”
-- Representative Jaime Raskin (MD-08)

It is essential that as many co-sponsors as possible join this action in a united voice to call for increased funding for post-viral research into ME/CFS.

Please contact your Representative TODAY and ask them to ask them to join this effort.

Use the form below to send a message to your REPRESENTATIVES to urge their support. 
*Don't forget the Prefix drop down box!*

URGENT ACTION ALERT: SUPPORT INCREASED FUNDING FOR POST-VIRAL-DISEASE RESEARCH INTO ME/CFS!

“Chronic neurological problems [like ME/CFS] have been tied to other types of coronaviruses in the past…We must really look hard, particularly with these types of coronaviruses, for chronic effects that are in the neurological category.”
– Dr. Mady Hornig, Associate Professor of Epidemiology at the Columbia University Mailman School of Public Health

Thanks to your hard work during ME/CFS Advocacy Week, the U.S. Senate is currently circulating our request to include ME/CFS research funding in the next COVID-19 package.
Ask your Senator to sign-on to this effort today!

Our champion, Senator Ed Markey, is leading our initiative to include ME/CFS research funding in future COVID-19 response legislation. If successful, this request would bolster ME/CFS research at the National Institutes of Health (NIH) by including an additional $60 million for expanded research opportunities looking at connections between ME/CFS and COVID-19 survivors.

It is essential that as many Senators as possible join this action in a united voice to call for increased funding for post-viral-disease research into ME/CFS.

Please contact your Senators TODAY and ask them to ask them to sign-on to this effort.


Use the form below to send a message to your SENATORS to urge their support. 

*Don't forget the Prefix drop down box!*

“Chronic neurological problems [like ME/CFS] have been tied to other types of coronaviruses in the past…We must really look hard, particularly with these types of coronaviruses, for chronic effects that are in the neurological category.”
– Dr. Mady Hornig, Director of Translational Research at the Center for Infection and Immunity at the Columbia University Mailman School of Public Health

Increasingly, there are reports of COVID-19 survivors who aren't getting better. Fever. Brain Fog. Joint pain. A body made out of lead. Feeling like a dead battery. A story that people with ME/CFS recognize and know intimately. ME/CFS epidemics have historically followed viral outbreaks and the majority of people with ME/CFS were triggered by a viral infection. The field of ME/CFS research is needed now more than ever, to find answers and improve the lives of millions with ME/CFS and COVID-19.

Solve M.E. is calling for immediate response measures for ME/CFS in the next COVID-19 response package. We are recommending $60m to be authorized for NIH post-viral neuroimmune research, specifically focusing on ME/CFS and COVID-19.

Use the form below to send a message to your members of congress to urge their support. 

*Don't forget the Prefix drop down box!*

Florida Congressmen Gus Bilirakis and Darren Soto are leading the whole Florida delegation in Congress to sign a letter to National Institutes of Health (NIH) Director, Dr. Francis Collins, urging more urgent investment for research on ME/CFS.

We need Florida patients, caregivers, and loved ones to take action!
 
The Florida delegation is ready to lead after years of constituents, like you, raising their voices and because of advocacy and research results from Dr. Nancy Klimas and Nova Southeastern University. This action can set the precedent to have other states step up too.

The deadline for co-sponsorship is 5:00pm ET on Wednesday February 12^th!

2019 was record-breaking for ME/CFS with unprecedented response and mobilization from our representatives in Congress. SIXY-FOUR members of the House and Senate (11%!) signed our appropriations requests. As September 30 rapidly approaches, Solve ME is writing each of these members to thank them for supporting us during this year’s appropriations process.
If you’d like to join us, please add your name to our “Thank you!” letter using the form below.

*Please Note*: The form requires the "Prefix" box to be completed and the "Show My Officials" button selected before you can press the "Join our Letter" button.

URGENT ACTION ALERT: SUPPORT A FUNDING INCREASE FOR ME/CFS!

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.

Want to take your advocacy to the next level - visit our action guide for beginners, intermediate and advanced advocates at: https://solvecfs.org/urgent-action-alert-support-a-funding-increase-for-me-cfs-2/

Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

URGENT ACTION ALERT: SUPPORT A FUNDING INCREASE FOR ME/CFS!

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

Our champions, Senators Markey and Collins, led two requests that can increase funding for ME/CFS research!

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.

The CLINICAL TREATMENT Act, H.R. 913, was introduced by Representatives Ben Ray Lujan (D-NM-03) and Gus Bilirakis (R-FL-12) to guarantee coverage of the routine care costs of clinical trial participation for Medicaid enrollees with a life-threatening condition or disability.

Clinical trials are a critical weapon in the fight against ME/CFS.
 
Medicaid insures nearly one-fifth of the U.S. population and is the only major payer that is not required by federal law to provide coverage of the routine care costs for participating in a clinical trial. Improved access and coverage of clinical trial participation benefits ME/CFS patients and helps reduce the cost of clinical trials. This is vital for under-funded diseases, like ME/CFS, which struggles to secure funds for clinical trial research.
 
Medicaid serves a large portion of under-represented minorities, ethnicites, and disabilities that are not well represented in traditional clinical trial enrollment. The Clinical Treatment Act (H.R. 913) is one step towards improving the representation of ME/CFS patients in clinical trials and reducing the cost of ME/CFS clinical trials in the future.
 

In TWO days, Senators Markey and Collins will introduce our resolution recognizing International ME/CFS Awareness day on May 12^th. This is the last chance to urge your Senator to be a part of this historic moment.

Use the form below to ask your Senator to become a co-sponsor of our resolution.

The deadline for co-sponsorship is 5:00pm ET on Tuesday May 7^th!

In TWO days, Senators Markey and Collins will introduce our resolution recognizing International ME/CFS Awareness day on May 12^th. This is the last chance to urge your Senator to be a part of this historic moment.

Use the form below to ask your Senator to become a co-sponsor of our resolution.

The deadline for co-sponsorship is 5:00pm ET on Tuesday May 7^th!

In TWO days, Senators Markey and Collins will introduce our resolution recognizing International ME/CFS Awareness day on May 12^th. This is the last chance to urge your Senator to be a part of this historic moment.

Use the form below to ask your Senator to become a co-sponsor of our resolution.

The deadline for co-sponsorship is 5:00pm ET on Tuesday May 7^th!

Now, we turn to the Senate to make real change for ME/CFS! 

Our champion, Senator Markey, is currently asking for support for TWO requests that can increase funding for ME/CFS research!

1) Requesting $9.9 million for ME/CFS programs at the CDC (Labor-HHS committee)
2) Adding ME/CFS to the Peer-Reviewed Medical Research Program (Defense committee)

Please contact your Senator TODAY and ask them to sign-on to these efforts.

Your Senator should contact Ms. Brianna Battle (Brianna_Battle@markey.senate.gov) in the office of Senator Markey.  The deadline to sign on is COB, Tuesday, April 9^th.

Raise your voice for ME/CFS funding today!

Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

Today is the day we can make real change for ME/CFS! 

Our champions, Congressmembers Lofgren and Eshoo, are currently asking for support for TWO requests that can increase funding for ME/CFS research!

1) Requesting $9.9 million for ME/CFS programs at the CDC (Labor-HHS committee)
2) Adding ME/CFS to the Peer-Reviewed Medical Research Program (Defense committee)

Please contact your member of the House of Representatives TODAY and ask them to sign-on to these efforts.

Your Representative should contact Priscilla Kim in Rep. Lofgren’s office at Priscilla.Kim@mail.house.gov, or x53072.  The deadline to sign on is COB, Wednesday, March 27^th.

Raise your voice for ME/CFS funding today!

Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

Today is the day we can make real change for ME/CFS! 

Our champions, Congressmembers Lofgren and Eshoo, are currently asking for support for TWO requests that can increase funding for ME/CFS research!

1) Requesting $9.9 million for ME/CFS programs at the CDC (Labor-HHS committee)
2) Adding ME/CFS to the Peer-Reviewed Medical Research Program (Defense committee)

Please contact your member of the House of Representatives TODAY and ask them to sign-on to these efforts.

Your Representative should contact Priscilla Kim in Rep. Lofgren’s office at Priscilla.Kim@mail.house.gov, or x53072.  The deadline to sign on is COB, Wednesday, March 27^th.

Raise your voice for ME/CFS funding today!

Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

ME/CFS must be represented!

On September 6, the Secretary of Health and Human Services disbanded the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) by allowing the charter for the committee to expire after 16 years.

The Chronic Fatigue Syndrome Advisory Committee was the only voice exclusively for the ME/CFS community in the federal government. We cannot allow the administration to silence people with ME/CFS, their loved ones, scientists, and advocates. Senator Markey is leading a bicameral (U.S. House and U.S. Senate) letter to the Department of Health and Human Services (HHS).

Use this form to contact your Senators and Member of Congress IMMEDIATELY and urge them to sign this letter to the Department of Health and Human Services (HHS). The letter (1) states that more must be done by HHS to address ME/CFS needs, (2) requests HHS to explain how it will fill the gap left by the September, 2018, dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and (3) poses detailed questions regarding the ME/CFS activities and plans of the National Institutes of Health and Centers for Disease Control. 

This is a joint action of Solve ME/CFS Initiative (SMCI), #MEAction, and the Massachusetts ME/CFS & FM Association

**Please note - due to the requirements of the Congressional messaging system - the "Prefix" item must be selected in order to send your message to your members of congress**
 

ME/CFS must be represented!

On September 6, the Secretary of Health and Human Services disbanded the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) by allowing the charter for the committee to expire after 16 years.

The Chronic Fatigue Syndrome Advisory Committee was the only voice exclusively for the ME/CFS community in the federal government. We cannot allow the administration to silence people with ME/CFS, their loved ones, scientists, and advocates.

Join Solve ME/CFS Initiative in calling on congress to establish a new ME/CFS Federal Advisory Committee – through congressional action – to ensure that our community will be heard!




**Please note - due to the requirements of the Congressional messaging system - the "Prefix" item must be selected in order to send your message to your members of congress**
 

Senator Ed Markey of Massachusetts has agreed to lead a Senate Resolution for ME/CFS. The resolution is intended to raise awareness and voice the position of the Senate regarding ME/CFS. Specifically, it highlights the prevalence and effects of ME/CFS, encourages the NIH and other federal agencies to support research, and calls upon the medical community to improve medical education and training efforts.

You can use the form below to send a message to your Senators, asking them to join Senator Markey in this historic effort.


Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

Led by Congresswomen Ana Eshoo and Zoe Lofgren, members of congress are coming together in a single voice to stand for ME/CFS. Will your representative join them?

Use the form below to send a message to your member of congress and ask them to join the letter to the US House of Representatives Appropriations Committee for ME/CFS funding and research.

*Deadline is March 14th!*

Read the full letter and committee report language here.  In brief, the proposed report language:

(1) Supports continuation of the $5.4 million ME/CFS funding for the Centers for Disease Control’s (CDC),

(2) Encourages CDC to resolve ME/CFS case definition issues and expand its efforts to educate health care providers,

(3) Recommends that NIH create a strategic plan for ME/CFS research and increase the amount and types of funding,

(4) Urges the Department of Health and Human Services to devise a multi-year strategic plan. The sign-on letter states that the increases in NIH’s budget affords NIH the opportunity and ability to increase funding to better reflect the ME/CFS disease burden.

This action is a joint effort between #MEAction and the Solve ME/CFS Initiative.

Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

Did you know that Congress oversees a $11.9 billion medical research budget independent from the NIH?

It's called the Congressionally Directed Medical Research Programs (CDMRP) and right now ME/CFS is not an eligible research topic area. But we can change that and open up a whole new area of research funding for ME/CFS.
 
Please use this form and ask your member of Congress to request ME/CFS be added as an eligible research topic area.

Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC....again.

Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we've made so far!
 

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