ME/CFS: Dying alive

When Larissa* meets up with friends, she sets an alarm for 20 minutes. She can't stay longer than that. If she pushes herself past her limit, she crashes. It feels a bit like dying , she says.

People with ME/CFS are constantly exhausted. So exhausted that they can't lead a normal life. More than half of those affected can no longer work. Larissa spends most of her time lying down. In a darkened room, with earplugs in her ears and a mask over her eyes. After everything she does, she needs a 30- to 45-minute break. Wake up – rest. Go to the toilet – rest. Brush her teeth – rest. Eat – rest. When she recently took a bath for 15 minutes, she was completely exhausted for five days afterward.

What is ME/CFS?

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This neuroimmunological disease often leads to severe physical disability. Many sufferers experience severe pain, muscle cramps, and cardiovascular problems; they feel flu-like and have trouble sleeping. Sitting or standing upright is difficult. And her brain isn't functioning properly either: "Thoughts simply disappear from my head," says Larissa. "Then I can't find them anymore." She finds it difficult to remember several things at once. In her early 30s, she started reading children's books again, with large print and lots of pictures.

For this article, Larissa described her life in many short voice messages over the course of weeks. "Some of us say you can lose your life without dying," she writes. "I can understand what they mean."

How does ME/CFS occur?

ME/CFS usually begins after an infectious disease, such as mononucleosis or the flu. Larissa's case was COVID-19 . Within a few weeks, she became extremely ill. She felt as if she were moving through water, the air suddenly felt so heavy. Standing became a challenge. Even watching television was too strenuous. Muscle pain, joint pain, nerve pain, and headaches followed. Then came sleep disturbances and tinnitus, and finally, nausea and trouble walking.

Larissa went from doctor to doctor, telling her to think positively, eat vegetables, and do yoga. When they tried to cure her exhaustion with physical therapy, occupational therapy, and cold knee compresses, her body completely collapsed. Larissa was confined to a wheelchair from then on.

It's typical for ME/CFS that even minor exertion worsens symptoms. This is called post-exertional malaise (PEM) . Sometimes the symptoms remain permanently worse afterward. Larissa says it's as if she'd just run up a mountain. She only brushed her teeth. Others describe the condition as having the flu, a hangover, and jet lag all at once.

“Because I long with all my being to live”

What life means to Larissa: Making decisions, making plans, experiencing things. Light, sounds, feelings. Conversing. Thinking.

What her body tolerates: Lying in silence. Thinking as little as possible. Feeling as little as possible.

"Actually, everything I do is a battle," says Larissa. "But I constantly lose these battles." For example, the battle of personal hygiene. A full wash once a week is just one of her battles. Larissa has to choose: "PEM or being clean."

The fact that things won't continue like this forever is now a reassuring prospect for her. "If I ever choose to undergo euthanasia, it won't be because I want to die. It will be out of love for life," she says. "Because I long with all my being to live. But I can't with this illness."

Larissa's case is severe. There are milder cases where those affected can still work and lead a reasonably independent life. But some are even worse off than her: so bad that they can't even lift their arm. Even the mere presence of another person worsens their condition.

One possible explanation: The disturbed blood circulation G

Even though ME/CFS has been known for more than 50 years, it's still not entirely clear what exactly happens in the body. For a long time, there were many inconsistent findings, but no explanation for the bigger picture.

A promising approach: "We know that in ME/CFS, blood circulation is not adjusted," says Carmen Scheibenbogen. She heads the Charité Fatigue Center in Berlin and is considered Germany's leading expert on this multisystem disease. Blood circulation to the brain and muscles in particular suffers. "If you view the circulatory disorder as a central disease mechanism, you can also explain the clinical picture well." The muscle soreness-like feeling, the difficulty concentrating, the exhaustion. The body only functions well when sufficient oxygen reaches the tissue and sufficient energy is produced.

Carmen Scheibenbogen's team is currently investigating whether a drug used to treat heart failure can also help ME/CFS patients. This drug helps blood vessels dilate, a mechanism that no longer works well in ME/CFS sufferers.

The immune system turns against the body

Furthermore, in ME/CFS patients, the immune system doesn't rest after the triggering infection, and minor inflammations continue to flare up. Antibodies that were actually directed against the infection sometimes turn against the body itself, for example, against nerve cells. The autonomic nervous system, which controls all those processes we don't even notice, such as our heart rate or blood pressure, appears to be particularly affected.

Many studies focus on specific antibodies that bind to stress receptors and disrupt the body's stress response. This is consistent with the symptoms: ME/CFS patients often feel like they are under constant stress or are easily exhausted. Their appropriate response to stress is disabled. Since stress receptors also control blood flow, this can lead to the body not being able to adjust properly during exercise.

Around ten years ago, Carmen Scheibenbogen investigated what happens when these antibodies are flushed out of the affected patients' bloodstreams. Indeed, many patients experienced rapid improvement. However, studies like this have not yet been translated into standard therapy . And this is only one possible explanation, and probably not applicable to all patients.

What can you do?

To date, there is no therapy for ME/CFS that addresses the root causes. Most attempts are made to alleviate the symptoms. The most important measure is " pacing," in which sufferers learn to recognize their own limits and not exceed them. For Larissa, this often means: putting in earplugs. Putting on an eye mask. Living lying down.

There is a lack of clinical studies that target the body's misguided immune response, specifically the B cells that produce autoantibodies. Drugs that can do this do indeed exist—but they are approved for other diseases. Pharmaceutical companies have shown little interest in conducting studies for ME/CFS , says Carmen Scheibenbogen.

It will be years before better medications are available, says the doctor. However, she is confident that ME/CFS is treatable. "I consider these diseases with a high chance of a complete cure."

Long battle for attention

ME/CFS has been an officially recognized disease since 1969. An estimated 17 million people worldwide are affected, with women significantly more often than men. Thus, it's not a rare disease. It's the "most common misunderstood serious illness," says Carmen Scheibenbogen.

For a long time, ME/CFS was misinterpreted as a psychiatric or psychosomatic illness. This is sometimes still the case today. Larissa's initial diagnosis was burnout. The illness is often not taught at universities or is taught incorrectly, says physician Carmen Scheibenbogen. "And if you don't know the clinical picture, you tend to assume that it can't actually be like that and that it's probably a functional illness."

Larissa says, "We're being made invisible." She also blames the healthcare system for her increasingly poor health. Critical moments include when she had to endure the neon lights in the long-COVID outpatient clinic. When the occupational therapist tried to motivate her to do dance therapy. When she couldn't do any more in the cognitive test. Larissa even considers the healthcare system dangerous for ME/CFS patients. "Because it demands that we push ourselves beyond our limits."

To regain visibility, those affected will lie down on the streets across Germany on May 10th. Larissa helped organize the demonstration. She can't participate. She doesn't even have the strength to lie down.

*Name changed by the editors.