In Long COVID, Advocates Fighting Chronic Fatigue Syndrome See Hope

Christine Jamieson was diagnosed with COVID-19 in late June after rushing to California from Washington, D.C., to visit her sick father.

Her initial symptoms were mild, like she had a cold. But Jamieson, 36, says on her 13th day of sickness, the fatigue hit.

“The word ‘fatigue’ can be very misleading. I think that most people think that fatigue feels like sleep deprivation or exhaustion after exercise,” she says. For Jamieson, fatigue meant she could barely move, lacking the energy to even shift from sitting up to lying down. Six months later, among the complex and myriad health concerns Jamieson has experienced since her initial bout with COVID-19, she was diagnosed with myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS.

[READ: Who Are the COVID Long-Haulers?]

Now, she looks back on her positive COVID-19 test as “the day my life completely changed.”

ME/CFS — a condition characterized by profound and disabling fatigue, with symptoms that also can include dizziness and problems concentrating — has found its way into the discourse surrounding long COVID, which is marked by symptoms of illness that persist or occur long after an initial case of COVID-19. Between 836,000 and 2.5 million people in the U.S are estimated to have ME/CFS, and research has shown the condition is more likely to occur in women.

Notably, top medical experts have pointed out similarities between ME/CFS and some symptoms reported by long COVID sufferers. And ME/CFS patients and advocates have seized the moment, offering their support and organizing power to long COVID patients, while also hoping research into long COVID will yield answers for them, too.

“My hope would be that as we study long COVID, and look at those comparisons with chronic fatigue syndrome, we’ll learn a lot about both of them,” National Institutes of Health Director Dr. Francis Collins recently told members of Congress.

Collins added that the hope would be to find treatments for both, “because there’s lots and lots of people with chronic fatigue syndrome who are still waiting for something that’s going to help them.”

Mutual Support

Long COVID is characterized by a wide range of symptoms that can include fatigue, shortness of breath and “brain fog.” There’s still much that’s unknown about the condition, including who among COVID survivors gets it and why.

But some have observed that long COVID appears similar to ME/CFS. Infectious disease expert and White House adviser Dr. Anthony Fauci has pointed out parallels, and the U.S. ME/CFS Clinician Coalition wrote a letter last year encouraging providers to consider ME/CFS as a diagnosis among long-haul patients.

Dr. John Brooks, chief medical officer for the CDC’s COVID-19 response, also noted the comparison during a House Energy & Commerce subcommittee hearing in April, but cautioned against calling long COVID and ME/CFS the same condition.

Brooks tells U.S. News that it’s common for clinicians to want to understand conditions based on what they already know. But while there have been some similarities between ME/CFS and long COVID, he also says there have been differences. Unlike many ME/CFS patients, for example, long COVID patients know exactly what first made them sick. Additionally, some long COVID patients have pulmonary and cardiac symptoms not typically seen in ME/CFS.

“I think it’s important to make sure that we look at this disease and not (put) it together with ME/CFS,” Brooks says. Still, he says the similarities between the two mean that ME/CFS patients can provide solid support systems for long COVID patients.

Jamieson can tick off the support and advocacy groups she’s found since her diagnosis: Survivor Corps, Solve M.E. and the Long COVID Alliance, among others.

[SEE: Latest Coronavirus and Vaccine News]

“My family, friends and colleagues have been immensely supportive to me, but nothing can replace a community of people who are struggling with my same medical condition,” she says.

Through webinars, Facebook groups, briefings and even Capitol Hill lobbying, such groups hope to achieve often overlapping goals: illness recognition and, importantly, funding for research.

Many advocates have eyes on one pot of funding in particular: A $1.15 billion initiative the NIH launched earlier this year aimed at studying long COVID. Collins has said he hopes insight gained through this research will help experts increase their knowledge about other diseases with similar symptoms. ME/CFS falls into that category, but history has sparked skepticism for some.

“The low amount of research dollars that the U.S. government has spent on ME/CFS compared with other medical conditions with a lower disease burden is basically criminal,” Jamieson says.

Funding Concerns

A 2020 analysis of NIH funding published by the Journal of Women’s Health found that in nearly three-quarters of cases where a disease impacts primarily one gender, the pattern of research funding favored males — meaning either the disease affects more women than men yet was underfunded with respect to its burden, or that it affects more men and was overfunded. In 2019, funding for ME/CFS — which affects women disproportionately and was among “the most underfunded diseases” analyzed, according to the study — was $15 million. By comparison, tuberculosis — a male-dominant disease and among the most overfunded, according to the study — received $488 million.

“When it comes to social responsibility, at least insofar as the consideration of women in its disease portfolio, NIH appears to be falling short,” the report states.

Also in 2019, Jennifer Spotila, an ME/CFS advocate, wrote in STAT News that based on documents obtained through a Freedom of Information Act request, she and a colleague calculated that the NIH funded 25% of all ME/CFS grant applications between 2011 and 2016, marking a higher-than-average acceptance rate.

But between 2008 and 2016, NIH funding for ME/CFS research averaged some $5 million a year, Spotila said. In connection with the agency’s establishment of new collaborative research centers focused on ME/CFS, the NIH spent nearly $14 million in 2017, Spotila said. (In separate posts, she digs into and disputes the NIH’s reported total of $15 million for 2017, as well as its reported totals for other years.) But funding the next year dropped some, she said, and she criticized the agency for an “obstacle course” in which ME/CFS research has faced numerous barriers to NIH funding, including a lack of calls for research proposals on the condition.

[READ: COVID Long Haulers Could Change the Disability System]

“While there is no single solution for its broken response to ME, there are many actions (the NIH) can take that would lower these barriers and encourage more applications for funding ME/CFS research,” Spotila wrote in STAT.

In a statement to U.S. News, Dr. Walter Koroshetz, director of the NIH’s National Institute of Neurological Disorders and Stroke, says the NIH does not allocate a set amount of money for specific diseases, but that “research supported through the NIH grant system is primarily investigator-initiated, and the amount of research funding for a particular disease or disorder depends on the number of meritorious grant applications that the NIH receives and is able to fund.”

He adds that a working group has been looking to find ways to bring new investigators into the ME/CFS arena, and that experts expect the NIH’s $1.15 billion long COVID initiative — dubbed PASC, for Post-Acute Sequelae of SARS-CoV-2 Infection — to prove valuable on the ME/CFS front.

“We believe that almost all components of the PASC initiative will be relevant to ME/CFS, and see the possibility that the … effort will stimulate greater interest among the scientific community in tackling ME/CFS itself,” he says.

Grant awards for the long COVID initiative are expected to be announced in the coming weeks. Leaders of Body Politic — a collective that includes patients with long COVID as well as patients with long COVID and ME/CFS, a group official tells U.S. News — urged the NIH in a letter to prioritize funding projects that build upon ME/CFS research when granting awards, saying the agency “now has an opportunity to provide answers to this growing population and adjacent groups that have historically been deprioritized for funded research.”

“Long COVID patients share both symptoms and experiences with these patient populations, and we, as Long COVID patients and activists, have learned much from people with ME/CFS and related illnesses,” wrote Fiona Lowenstein and Angela Vázquez, the group’s president and vice president. “It is also crucial to prioritize investigations that consider links between these conditions, as we are seeing Long COVID patients being diagnosed with ME/CFS, dysautonomia, and Mast Cell Activation Syndrome.”

Members of Congress have also taken note. At the same congressional hearing where Brooks and Collins spoke, Rep. Lori Trahan expressed concerns with the funding of ME/CFS research by the NIH.

“Dr. Collins, historically, research into clinical trials and treatments for ME/CFS has gone underfunded at NIH, leaving many patients to suffer physically,” the Massachusetts Democrat said. She asked if some of the $1.15 billion might go toward ME/CFS research.

For his part, Collins defended the agency’s approach to ME/CFS, pointing to its recent funding of the research centers and a data hub to delve into the condition.

“We have no less than four centers of excellence to work on CFS, our own intramural program at NIH has a big program bringing patients to our clinical center for intense study with CFS and the same investigators are now studying long COVID with the same mindset,” he told Trahan. “So if there’s an overlap between this, I think we’re going to discover what that might be.”

Within the NIH, Dr. Avindra Nath, a senior investigator with the Section of Infections of the Nervous System, is hoping for one of those long COVID grants. Nath’s own research began with HIV/AIDs and has since led him to ME/CFS, which he suspected may become relevant at the start of the pandemic.

“From the beginning … because of our experience with ME/CFS, we knew that a certain percentage of patients will have symptoms that would resemble ME/CFS because it’s happened with almost all infections. Why not with this one?” Nath says.

Nath wants to identify the differences between ME/CFS and long COVID. He has already studied 25 ME/CFS patients and 25 healthy volunteers; he now wants to examine 50 long COVID patients and 50 patients who had COVID-19 but fully recovered from it as a control group. Another goal, he says, is to identify therapeutics that might work for treatment.

As for funding, Nath said in April he had not received money from the NIH for this particular study beyond his annual lab funding, and has submitted a grant application to the long COVID initiative for $1 million.

Nath notes that every patient wants to see better funding and research for the disease they’re suffering from. But he also believes research on long COVID holds big implications for ME/CFS. He says it’s often unknown for ME/CFS patients what triggered their symptoms, but with long COVID patients, “you have a better possibility of filling up blanks.”

Dr. Ron Tompkins, founding director of the Center for Surgery, Science & Bioengineering at Massachusetts General Hospital, is also hoping to snag a grant. He agrees that research on long COVID may yield results for ME/CFS patients. But he, like others, has concerns about the NIH’s dedication to the illness.

Tompkins says the NIH could examine its review process for grant proposals to look for any biases toward funding some projects over others. He adds that responsibility also lies with Congress to appropriate more dedicated funding. Specifically, Tompkins wants to see appropriation language aimed at studying ME/CFS in long COVID patients.

“What I’d love to see is congressional action that addresses the shortcomings (in ME/CFS research), and then it’s directed to mostly the NIH, but also CDC,” he says.

Interest on Capitol Hill

There has been interest on Capitol Hill in long COVID. At the April subcommittee hearing, lawmakers spent several hours questioning Brooks and Collins on long COVID. Several brought up stories of constituents sick with long COVID, including one lawmaker who asked about his daughter’s own case.

Rep. Don Beyer, a Virginia Democrat, also recently said he was reintroducing a bill with Rep. Jack Bergman, a Michigan Republican, to fund more research tied to long COVID.

And ME/CFS certainly hasn’t been left out of the conversation: The Beyer and Bergman bill was reportedly announced during a discussion hosted by Solve M.E., whose president, Oved Amitay, praised the effort. The Long COVID Alliance and Solve M.E. also recently held a week of advocacy aimed at speaking with lawmakers — including Rep. Jamie Raskin, a Maryland Democrat who addressed attendees in a virtual keynote — about long COVID and ME/CFS.

[MORE: COVID-19 Forced Workers to Make Choices]

In May 2020, Raskin introduced a measure to intensify the focus on ME/CFS at the NIH, noting that subsets of COVID-19 patients were, even then, presenting with ME/CFS symptoms. But the legislation did not advance. In his remarks to advocates, Raskin praised them for organizing, and said long COVID has only added urgency to finding answers for ME/CFS patients.

“I don’t need to tell you that the constituency for … research and understanding … on ME/CFS has only grown with COVID-19 and the long-haulers because there is a substantial percentage of the people who have been stricken with COVID-19,” Raskin said.

CDC guidance is also expected to come out soon to help providers recognize and treat long COVID — a welcome sign for many ME/CFS advocates who worry that, without guidance, advice that providers give to patients could be harmful to their recovery.

And so, until answers are found, Jamieson is waiting. In the course of her treatment, she has taken surveys that ask her: What does recovery look like to you?

“My answer is always the same,” she says. “I have not recovered from COVID-19.”

More from U.S. News

COVID Long Haulers Could Change the Disability System

CDC to Release Clinical Guidance on Identifying, Managing Long COVID

For COVID Long Haulers, Knowledge and Empathy Are Key to a Cure

In Long COVID, Advocates Fighting Chronic Fatigue Syndrome See Hope originally appeared on usnews.com

Update 05/13/21: This article has been updated.

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