Washington-Senator Dianne Feinstein (D-Calif.) joined Senator Edward J. Markey (D-Mass.) and a bipartisan group of their colleagues to call on Senate leadership to prioritize medical research funding for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in any upcoming coronavirus relief package. ME/CFS is a chronic, complex, and systematic disease that limits the daily activities of up to 2.5 million Americans. Viral outbreaks, similar to the current coronavirus pandemic, have triggered an increase in ME/CFS patients in the past. Action is needed to prepare for a potential wave of post-coronavirus patients with ME/CFS like symptoms. The National Institutes of Health (NIH) plays an indispensable role developing methods to properly diagnose and treat ME/CFS patients. By increasing medical research funding for ME/CFS, Congress can equip the health care system with the tools needed to effectively respond to the coronavirus pandemic ensuring no patients are left behind. 

In addition to Feinstein and Markey, the letter was also signed by Senators Chris Van Hollen (D-Md.), Cory Booker (D-N.J.), Angus S. King Jr. (I-Maine), Debbie Stabenow (D-Mich.), Kyrsten Sinema (D-Ariz.), Elizabeth Warren (D-Mass.), Jacky Rosen (D-Nev.), Mazie Hirono (D-Hawaii), Kevin Cramer (R-N.D.), Richard Blumenthal (D-Conn.) and Michael Bennet (D-Col.).

“Congress must take the necessary steps to maximize the ability to properly diagnose and treat post-COVID-19 patients with ME/CFS-like symptoms and ensure these patients are not left behind,” write the senators in their letter to Senate Majority Leader Mitch McConell and Senate Minority Leader Charles Schumer. “Strengthening the existing research infrastructure for ME/CFS will equip our nation with the resources necessary to improve the overall health of our nation moving forward.” 

In their letter, the senators call for inclusion of a supplemental NIH appropriation of $15 million each year over the next four years. The senators also call for report language accompanying the appropriation to direct the NIH to prioritize the following:

• New ME/CFS disease-specific funding announcements to deliver needed diagnostics and treatments faster
• An initiative to reach consensus on the ME/CFS case definition
• Mechanisms to incentivize researchers to enter the field 

The letter is available here and below.

Dear Leader McConnell and Leader Schumer: 

As Congress continues to work on legislation to address the COVID-19 pandemic, we encourage you to support increased funding for post-viral-disease research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Viral outbreaks have triggered an increase in ME/CFS patients in the past,1 and we are concerned that the current coronavirus disease pandemic could do so as well. We therefore must prepare for a potential increase in ME/CFS cases in COVID-19 survivors. We urge you to provide funding in future coronavirus response legislation that would bolster existing ME/CFS research initiatives at the National Institutes of Health (NIH).

ME/CFS is a complex, debilitating, predominantly post-viral2 chronic disease afflicting up to 2.5 million Americans of all ages and walks of life.3 Studies show that many viruses can cause ME/CFS.4 Severe Epstein-Barr virus (mononucleosis) infections—which can affect a person’s spine, brain, and nerves—trigger ME/CFS in up to 10% of patients.5 SARS coronavirus, which is highly similar to the novel coronavirus causing the current pandemic (SARS-CoV-2), led to

persistent impaired health in many survivors, with 17% failing to return to their original work within a year;6 many of the survivors that failed to return to work experienced ME/CFS-like symptoms.7

The current pandemic has the potential to cause a significant increase in the number of ME/CFS patients in the United States. There are more than one million confirmed cases of SARS-CoV-2 in America8, and the Centers for Disease Control and Prevention projects that 160 to 214 million Americans could be infected with SARS-CoV-2 before the pandemic is controlled.9 If COVID- 19 follows the predicted pattern of the older SARS coronavirus, by this time next year as many as 408,000 to 3,570,000 Americans may become sick with ME/CFS-like symptoms.10 If COVID- 19 behaves like Epstein-Barr, in two years the United States could see an additional 175,000 to 1,500,000 Americans chronically ill and possibly permanently disabled by ME/CFS.11 SARS- CoV-2 has already shown to cause a wide range of symptoms, and it is crucial we closely monitor long-term health impacts; in particular we are concerned that COVID-19 could increase the number of cases of ME/CFS in the United States. Congress must take the necessary steps to maximize the ability to properly diagnose and treat post-COVID-19 patients with ME/CFS-like symptoms and ensure these patients are not left behind. 

Research shows that rapid diagnosis and appropriate treatment early in the course of ME/CFS (within one year of onset) can vastly improve outcomes for those affected by this debilitating disease.12 To address this urgent crisis, we call for a supplemental NIH appropriation of $15 million each year over the next four years to bolster and expand existing ME/CFS research initiatives, specifically, by funding the research opportunities outlined in the National Advisory Neurological Disorders and Stroke Council (NANDSC) Working Group report. We also call for report language accompanying the appropriation that encourages leaders to direct NIH to prioritize (1) new ME/CFS disease-specific funding announcements, including those with set- aside funds, to deliver needed diagnostics and treatments as quickly as possible, (2) an initiative to reach consensus on the ME/CFS case definition, and (3) mechanisms to incentivize researchers to enter the field.13 By taking these steps, the U.S. health care system will be better equipped to identify risk factors quickly, appropriately diagnose patients, and prevent the long-term disability of COVID-19 survivors.

NIH continues to play an essential role in our scientific understanding of ME/CFS, but there is still much work left to do. Strengthening the existing research infrastructure for ME/CFS will equip our nation with the resources necessary to improve the overall health of our nation moving forward.

We appreciate your leadership as Congress continues to respond to this public health emergency. Thank you for your attention to our request.

Sincerely, 

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