Across the nation, a growing number of medical experts, patients, lawmakers, and health care advocates are calling on Congress to approve research funding for ME/CFS — a serious, multisystem disease that affects as many as nine million Americans and continues to leave patients with no FDA-approved treatment and no validated diagnostic test. ME/CFS — officially known as myalgic encephalomyelitis/chronic fatigue syndrome — is a debilitating neurological and immunological illness, most commonly triggered by a viral infection, that can strip patients of their ability to work, leave their homes, and in the most severe cases, perform basic daily tasks. 

Despite affecting more Americans than multiple sclerosis and Parkinson's disease combined, ME/CFS has been chronically underfunded and overlooked by the federal government for decades — costing the United States an estimated $362 billion annually in lost productivity and medical expenditures, and leaving millions of patients, families, and caregivers to navigate a medical system with no answers to offer them.

Congress now has the ability to change that: In 2024, the National Institutes of Health approved the ME/CFS Research Roadmap, the first-ever consensus-based federal blueprint for addressing the disease. Developed by leading scientists, clinicians, and patients, the Roadmap lays out a clear path forward. Now, advocates and experts across the country are calling on Congress to include $50 million in the FY27 federal spending bill to fund it. #NotJustFatigue has also been meeting directly with members of Congress and their staff, working to move lawmakers from awareness of ME/CFS to firm commitments to fund the Roadmap. Paired with voices from Maine to West Virginia, from emergency rooms to state legislatures, ME/CFS advocates are making clear that the time to act is now.

Surging Calls for Congress to Take Urgent Action

WEST VIRGINIA

Dr. Tom Takubo, Former State Senator | West Virginia Press

“What two decades of practice have taught me is that West Virginia’s health challenges are not random. They are the product of underfunding, under researching, and chronically underestimating the complexity of what serious illness actually does to people. That is exactly the pattern I see playing out with myalgic encephalomyelitis/chronic fatigue syndrome — ME/CFS. And it is why Congress must act in this year’s federal spending bill to fund the research plan that has been waiting for resources since 2024.” [July 10, 2026]

MAINE

Dr. Amy Blackstone, Former U of Maine Prof. Living with ME/CFS | Bangor Daily News

“The average ME/CFS patient loses nearly half their income. Many leave the workforce entirely. Others spend years cycling through doctors, racking up bills for tests without answers. And because the disease affects women at about three times the rate of men, those losses fall disproportionately on the same people who were already earning less. … People with ME/CFS are being failed by a federal research investment that has, for decades, amounted to a fraction of what the disease demands. … The NIH has a roadmap, the science is ready, and the plan is written. What is missing is the funding — and the recognition that the people waiting for it are not abstractions. They are Maine workers, Maine families, Maine neighbors who got sick and were told their disease was not real enough. It is real. It has cost us enough. It is time for Congress to fund the research.” [August 4, 2026]

Kristi Woods, Former Nurse Living with ME/CFS | Kennebec Journal

“Nationally, ME/CFS patients spend an average of $4,439 every year out of pocket on care that often produces no answers. Income drops to an average of 57% of what it was before the disease. In Maine, where rural families already stretch every dollar and public services are thin, those numbers translate into real devastation for real people. The good news is that for the first time, a federal plan exists. The NIH ME/CFS Research Roadmap lays out exactly what needs to happen: biomarker discovery, a validated diagnostic test and clinical trials for the most promising treatments. Congress recognized it last year and directed NIH to develop an implementation plan. All Congress has to do is fund it.” [August 24, 2026]

Carrie Niederman, Former Veterinarian Living with ME/CFS | Portland Press Herald

“Physicians cannot rely on tests or evidence that do not yet exist, and decades of inadequate federal research funding have left both patients and clinicians without the answers they need… By funding the NIH Research Roadmap, our elected leaders can help give thousands of Mainers — and millions of Americans — the better answers and better care they have waited far too long to receive.” [July 19, 2026]

MaryAnne Kinney, Former State Representative | The Maine Wire

“This is a serious, debilitating neuroimmune, neuroinflammatory disease that an estimated 15,000 Maine adults are living with right now. There is no FDA-approved treatment. There is no validated diagnostic test. And for decades, the federal government has done almost nothing to change that. That is not a medical failure. It is a policy failure — and it is one that Congress has the power to correct in this year’s federal spending bill. The moment to act is now, and Maine’s congressional delegation should be leading the charge.” [August 5, 2026]

CONNECTICUT

Subramani Seetharama, Chief of Rehabilitation Medicine, Hartford Hospital | CT Mirror

“As many as 45 percent of Long COVID patients meet the diagnostic criteria for ME/CFS, meaning thousands of Connecticut residents who got sick in the last six years and never recovered are living this story too. That is the problem. The Roadmap is the answer. It lays out concrete priorities: biomarker discovery, a validated diagnostic test, and clinical trials of the most promising treatments. Congress has recognized it and directed NIH to prepare an implementation plan. Only the funding is missing… So I am asking our delegation to use its influence over this bill now. Put $50 million for the ME/CFS Research Roadmap in the FY27 budget.” [August 31, 2026]

Elizabeth Ansell, Founder of #NotJustFatigue | CT Mirror

“Lawmakers should direct NIH to dedicate a multi-year funding stream to the ME/CFS Roadmap, require clear milestones and annual progress reports, and ensure that the new research infrastructure also serves Long Covid and related conditions… We do not need another decade of hearings or essays documenting neglect. We need Congress to give NIH a funded, accountable mandate to follow the map it has already drawn—and to judge success by whether fewer people are forced out of work and out of their lives. NIH has the roadmap. It’s up to Congress to decide whether it leads anywhere.” [December 24, 2025]

WISCONSIN

Christopher J. Ford, Emergency Medicine Physician | The Cap Times

“These patients experience cognitive impairment, profound fatigue that does not improve with rest, and a worsening of symptoms after even minor exertion. It’s a disease called myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), which affects as many as 9 million Americans, and tens of thousands across Wisconsin. There is no FDA-approved treatment and no validated diagnostic test. And despite it affecting millions of Americans, there has been no serious, funded federal plan to address it — until now… The NIH has a plan. Wisconsin's patients have waited long enough. It is time for our congressional leaders to take urgent action and fund it.” [June 22, 2026]

UTAH

Dr. Lucinda Bateman, Medical Director of the Bateman Horne Center | #NotJustFatigue

“We need money to do what we need to do. That mostly needs to come from federal sources… The Research Roadmap was a great process of including all kinds of people who came from different areas of expertise, often with background, family members and lived experience patients. It was a big process of splitting it up and reviewing the literature and each of these working groups to come together and say ‘here's where we are, here’s what's been done, and here's where we think it ought to go, and that it ought to be funded.’” [July 7, 2026]

NATIONAL

Rep. Gregg Harper, Former Congressman | DC Journal

“ME/CFS is one of the few issues that offers something genuinely rare: a bipartisan result with a clear, human story behind it, a ready-made plan, and an opportunity to deliver for millions of disenfranchised voters who have suffered in silence while its leaders have ignored them. … This Congress and administration can be the one that actually acts. Not only is it the right thing to do for millions of Americans living with ME/CFS, but it is also the politically smart thing to do before millions of voters head to the polls.”[June 12, 2026]

Jay Bhattacharya, Director of the NIH | American Thought Leaders

“You have patients with conditions that are poorly understood, where the medical system will gaslight them. Telling them it's a psychological issue rather than a physical issue, make you think you're crazy because you have symptoms you know you have but you can't convince anyone else to do anything about them…Long COVID, ME/CFS, chronic Lyme disease: a whole host of these conditions where it just fits a very similar pattern, a key underlying thing is that there isn’t excellent science to guide decision-making for clinicians or anybody else… I’ve made sure that people know at the NIH that I am very interested in investing in answers for patients with all those.” [February 11, 2026]

Cort Johnson, Founder of Health Rising | Health Rising

“I don’t think most people realize how big of a deal the ME/CFS Research Roadmap Initiative potentially is, and what it took to create it. It’s actually been in process for 7 years…Instead of accelerating a field like the other roadmaps have, the ME/CFS Research Roadmap is essentially trying to repair / build a field that the NIH has officially recognized is underfunded, and has recognized it’s underfunded for a long time, and yet, has done little about it.” [June 5, 2026]

Fidji Simo, Former OpenAI Executive | Fortune

“The delta between the disability from these diseases and the amount of funding and research being done on them is terrible. If you look at a condition like [ME/CFS], it is considered the most disabling disease of all diseases. Like when you look at the disease chart, it’s completely at the bottom, worse than cancer. And yet, like if you look at the amount of funding for this condition, it’s absolutely pathetic for two reasons. One, it primarily affects women, so of course you get less funding. Second, while it completely disables you, it usually doesn’t kill you. And so, the combination of these two things has made it that these diseases are really ignored, even though they affect people at the prime of their lives. You usually get affected between 20 and 40 [years old], and you’re completely disabled. You’re taken out of your life entirely, and so it’s a crazy amount of suffering.” [August 4, 2026]