An estimated 17 million people worldwide live with Chronic Fatigue Syndrome, yet they can do little to fight this debilitating condition. Now, patients are raising their voices in search of recognition and support. Those living with ME/CFS, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, experience relentless exhaustion and often cannot lead normal lives. More than half of them are unable to work. May 12 marks World Fibromyalgia and Chronic Fatigue Syndrome Awareness Day.
Larissa (name changed) spends most of her time lying in a dark room, wearing earplugs and an eye mask. After any small activity, she needs 30 to 45 minutes of rest.
What is Chronic Fatigue Syndrome?
This neuroimmune disease often leads to severe physical disability. Many patients suffer from intense pain, muscle cramps, cardiovascular issues, and flu-like symptoms. Even sitting or standing can become nearly impossible.
Cognitive function also declines. “Thoughts just vanish from my head,” Larissa says. Now in her 30s, she reads only children’s books with large print and pictures.
Over the course of several weeks, Larissa described her experience through short voice messages. “Some say you can lose your life without dying,” she wrote. “Now I understand what they mean.”
How does the illness begin?
ME/CFS symptoms often follow an infectious disease such as mononucleosis or influenza. In Larissa’s case, the trigger was COVID-19. Just weeks after the infection, she became seriously ill.
Standing up was a challenge. Watching television became exhausting. Soon after, she suffered from body-wide pain, sleep disturbances, tinnitus, nausea, and walking difficulties.
She saw numerous doctors and tried various therapies, but her body collapsed. She has since been confined to a wheelchair.
A hallmark of ME/CFS is post-exertional malaise (PEM), where even minimal effort worsens symptoms. “It feels like I’ve run up a mountain,” says Larissa, “when all I did was brush my teeth.” Others describe it as having the flu, a hangover, and jet lag—simultaneously.
“Every action feels like a battle”
For Larissa, life once meant making plans, feeling emotions, talking, experiencing light and sound. Now, her body tolerates only silence and stillness.
“Everything I do is a battle,” she says. “And they are battles I always lose.” Even basic hygiene—like taking a full bath once a week—is a major challenge.
“If I ever ask for euthanasia, it won’t be because I want to die,” she adds. “It’ll be because I love life too much to live it like this.”
Larissa’s case is severe. Milder cases allow people to keep working and live with some independence. Others are even more debilitated—some can’t raise an arm or tolerate human presence.
A possible cause: blood flow disruption
Though ME/CFS has been recognized for more than 50 years, the biological mechanisms are still not fully understood.
“We know that blood circulation is poorly regulated in ME/CFS,” says Dr. Carmen Scheibenbogen, director of the Fatigue Center at Charité Hospital in Berlin. Blood flow to the brain and muscles is especially impaired, leading to reduced oxygen delivery and energy production.
Scheibenbogen’s team is now studying whether a heart failure drug that dilates blood vessels could benefit ME/CFS patients by restoring circulation.
An immune system turned against the body
In ME/CFS, the immune system fails to return to baseline after the initial infection. Chronic low-grade inflammation persists, and in some cases, antibodies attack the body itself, such as targeting nerve cells.
The autonomic nervous system—which controls unconscious processes like heart rate and blood pressure—seems especially disrupted. Many patients feel under constant stress or become exhausted extremely quickly.
What can be done?
There is still no treatment that addresses the root cause. Most therapies aim only to manage symptoms. The most important strategy is “pacing”: helping patients recognize and respect their physical limits. For Larissa, this means lying down, wearing earplugs and a mask, and reducing all stimulation.
No clinical trials yet target the specific immune dysfunction believed to drive the disease. Some existing drugs may help by reducing harmful B-cell activity, but they are approved only for other conditions. According to Scheibenbogen, pharmaceutical companies have shown little interest in launching ME/CFS trials.
It may take years to develop effective treatments. Still, Dr. Scheibenbogen remains hopeful: “There is a high chance of full recovery in these diseases.” ME/CFS was officially recognized as a disease in 1969. Today, it affects some 17 million people worldwide—more women than men.
For decades, ME/CFS was dismissed as a psychiatric or psychosomatic condition. It is often poorly taught in medical schools—or not at all—says Scheibenbogen. “If doctors don’t know the clinical picture, they tend to assume it’s just a functional disorder.”
“We are being erased,” says Larissa. She blames the health system, too: “It keeps pushing us to go beyond our limits—and that’s what makes us worse.”
