ME/CFS Isn’t Just Misunderstood, It’s Actively Neglected

Artist and musician Becca Thomas knew something was wrong when they went from working two jobs, making art, and exercising consistently to feeling winded from a single flight of stairs.

It all started with a case of mononucleosis in 2017. “I never fully recovered after that and knew something was deeply wrong with my body,” Thomas tells POPSUGAR, adding that it took four years to get any real answers. “In those four years I faced a lot of medical gaslighting and dismissal from negligent doctors.”

As time went on, Thomas pushed through the first few months of grad school, struggling to concentrate on their day-to-day work. “Long hours reading and writing papers would cause the words on the page to dance around from double vision. I constantly felt like I was getting sick and would have flu-like body aches, complete with headaches, muscle pain, weakness, and dizziness,” they explain.

Exercise was a struggle, too, leaving them in agonizing pain and stuck in bed for days or weeks at a time. “My entire body would feel poisoned, my head on fire, my muscles screaming, all light and sound [felt] like daggers to my senses. There were points I struggled to move so much and my body felt like lead, [so] I had to crawl to the bathroom. The more I pushed myself, the weaker I became,” Thomas recalls.

They sought medical attention while still in grad school, but most doctors attributed their symptoms to stress. Without a diagnosis, everyday life became more difficult and Thomas experienced painful “crashes” more frequently. “At first these crashes happened a couple times a month, but then they became a weekly disruption I had to plan around,” Thomas says. “I was able to stay in school and finish my degree by the skin of my teeth, but not without great difficulty that would ultimately cause further decline in my health.”

In 2021, Thomas was two years out of grad school and still without a diagnosis. As their health continued to decline, they started doing their own research, eventually coming across myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for the first time. They learned their crashes were actually signs of post-exertional malaise (PEM), also called post-exertional neuroimmune exhaustion (PENE) — one of three primary symptoms required for an ME/CFS diagnosis (along with a reduced ability to perform pre-illness levels of activity, and unrefreshing sleep). They took their findings to a new doctor, research in hand, and finally received an official diagnosis.

Nonprofit organization Solve M.E. defines ME/CFS as a “chronic, complex, neuroimmune disease” often triggered by an infection or virus, although the exact cause is not fully understood. Exercise, daily activities, or exertion of any kind (physical, mental, or emotional) can trigger PENE and make symptoms worse. This may manifest as the kind of physical pain Thomas describes, but extends to cognitive symptoms as well, including speech and language problems, light and sound sensitivity, and problems with thinking and concentration (sometimes referred to as “brain fog”).

Previous CDC estimates put American ME/CFS cases at about 836,000 to 2.5 million (adding that about 90 percent of those were never officially diagnosed, due to a lack of awareness). However, the latest data puts this number closer to 4.5 million (affecting 1.3 percent of adults in the US between 2021 and 2022). While the exact cause is unknown, these steadily growing rates have been connected to long COVID — an umbrella term for health issues that persist months after contracting COVID-19. As it stands, there are over 200 documented long COVID symptoms, including ME/CFS. However, despite increased cases, ME/CFS remains grossly underfunded.

There are no FDA-approved treatments for ME/CFS — let alone a cure — and according to one study, ME/CFS had the lowest NIH funding relative to disease burden, estimating that it would take $203 million dollars to properly address 2017 levels of burden. In 2022, ME/CFS received $13 million (with the same estimates for 2023 and 2024) despite an increased disease burden from long COVID patients developing ME/CFS.

The very term “chronic fatigue” undermines the severity of the illness, painting an inaccurate picture of cumbersome burnout, as opposed to the debilitating reality, which leaves many bed-ridden or requiring a wheelchair. How does one fight for their illness to be taken seriously when people hear the term “fatigue” and think it’s an experience they can contextualize?

This misconception combined with flagrant systemic neglect and a lack of funding has led many people dealing with ME/CFS to suffer in silence. For the most part, they navigate their illness alone, spreading awareness in the hopes that someone in the medical community will take their experience seriously enough to offer them the reprieve they deserve.

Diagnosis Can Be Validating but Often Comes Too Late

While a diagnosis empowered Thomas to become an expert in their illness, the physical and mental damage had already been done.

“I can’t tell you the number of appointments I left in tears. I have medical trauma from those years I went undiagnosed and was shuffled around from one doctor to another,” Thomas says. Even after being diagnosed, not much changed. There’s no “cure” or approved treatment for ME/CFS, so management has been trial and error. With so few resources and a lack of any real treatment, Thomas’s illness has continued to progress. A year following diagnosis, they weren’t able to leave the house without a wheelchair and still don’t, only walking short distances.

“I don’t think I can remember what it feels like to wake up rested. Every day my entire body is in pain. Having been sick for almost seven years now, I hardly remember my life before,” Thomas says. “I’m trying my best to prevent further decline until research can catch up to the reality that millions of us have our lives on hold until we can access proper treatment and care.”

Awareness advocate Sammy Lincroft, 25, was initially diagnosed with depression and a rare autoinflammatory condition called Behçet’s disease, which causes inflammation in the blood vessels. But neither of those diagnoses fully explained their post-exertional malaise.

In pursuit of answers, Lincroft underwent a two-day cardiopulmonary exercise test (CPET) to test for ME/CFS. “This test made it obvious I had ME because it clearly demonstrated PENE,” Lincroft says. They finally had an accurate diagnosis, but due to the physical nature of the CPET scan (often conducted using a treadmill or stationary bike), diagnosis came at a personal cost. The overexertion of the exercise test (plus the condition being left unmanaged) led them to become bed-ridden, which has persisted for three years now. On top of that, the medical gaslighting Lincroft experienced led to a permanent distrust of doctors and their own body.

Now in the severe stages of ME/CFS, Lincroft needs regular IV fluids and around-the-clock care. “I became invisible — not because my illness could not be seen, but because I could not be,” they tell POPSUGAR.

The COVID Connection

Beth Pardo is among the people who developed ME/CFS after contracting COVID. She still remembers the spot of her initial exposure, stopping for wine at a grocery store in Ontario, Canada, on March 20, 2020.

A week after her shopping trip, Pardo received an email notifying her that she’d been exposed to COVID. In a matter of months, Pardo went from running ultramarathons to being unable to leave her bed. By 2021, she wound up meeting the diagnostic criteria for both long COVID and ME/CFS.

Hector Bonilla, MD, the director of Stanford’s ME/CFS clinic and a codirector of Stanford’s post-acute COVID-19 syndrome clinic, says he’s not surprised to see higher reports of ME/CFS post-COVID. “I’ve been [studying ME/CFS] for the past eight years. Our clinic is always, always busy,” Dr. Bonilla tells POPSUGAR, adding that the wait time to be seen is at least a year. And when he does see new patients, many report being dismissed and even insulted by their past providers.

Dr. Bonilla confirms that many different viruses have been linked to ME/CFS, COVID included. “Around 60-70 percent of the patients [referred to my clinic] have a viral illness at the beginning of the disease,” he says. “[ME/CFS] is a post-viral illness.”

The connection between long COVID and ME/CFS has helped raise awareness about both conditions post-pandemic, offering some new research into the processes at play. It’s a welcome change for patients and experts like Dr. Bonilla who are hoping for more investment in ME/CFS and long COVID research. But there’s still a long way to go when it comes to representation, care, and stigma.

The Fight For Visibility Is Far From Over

People with ME/CFS primarily rely on each other for community, advice, and hope, Pardo explains. “I think the bulk of the support that most ME patients get is from other ME patients, to be honest.”

In terms of what the healthcare industry could do better, Lincroft advocates for fair funding, better ME/CFS information for patients, and updated ME/CFS guidelines for medical providers. She also stresses the importance that ME/CFS be added to the list of state-funded disabilities, which would make it easier for patients to receive disability assistance.

Thomas points out that — despite just 20 percent of Americans viewing COVID as a major threat to the health of the US population today — the effects of post-viral illnesses continue to be felt by millions. If we don’t fight for change, there’s no guarantee anyone else will.

“We are still experiencing a mass disabling event in this ongoing pandemic,” Thomas says. “I spend a lot of time advocating for this illness and supporting other sick and disabled people, because we have nobody else speaking up for us.”