One day in Paris changed my life forever - ME/CFS – When the body can no longer cope
- Olav Bouman
- Jun 28
- 6 min read
A comprehensive review from a medical, social and neuroscientific perspective
A personal introduction to the topic
In the summer of 2012, I took the ICE train from Mannheim to Paris early in the morning to meet my long-time business friend François. My wife accompanied me and used the day to run errands, while François and I worked in a day office near Les Halles.
After the meeting, we dined at the traditional restaurant "Le Procope," where Voltaire had once been a guest. A perfect day.
That evening, back at the hotel, I suddenly felt severe pain in my right knee. A moment that changed my life forever – I haven't been pain-free for a single day since.
Years of diagnoses, therapies, surgeries, and rehab followed. Instead of improvement, new symptoms appeared: numbness, tremors, chronic fatigue, frequent falls, and full-body pain.
Twelve years later, I now live with severe limitations, having been in a wheelchair for many years. Numerous medical suggestions – from arthritis to fibromyalgia – have been of little help.
It was only through my own research that I discovered ME/CFS , and a lot of things suddenly made sense. I remembered a previous Epstein-Barr infection (EBV)—a possible trigger.
An official diagnosis is still missing, as is the case with so many other sufferers. But all the symptoms speak for themselves. And that's why I dedicate this article to a disease that leaves profound neurological, social, and personal scars and is still not taken seriously by many.
Perhaps someone will recognize themselves in my words. Perhaps this post will help—as information, as encouragement, or simply as a sign: You are not alone.
When even rest does not bring recovery
Imagine waking up in the morning and feeling more exhausted than the night before. Your body seems paralyzed, your mind is foggy, the light is blinding, and every noise is painful. Every movement becomes a strain. It's not that you slept badly; you simply have no energy—even though you actually look healthy.
Welcome to the world of ME/CFS – a disease that is often overlooked, frequently misunderstood, and rarely taken seriously.
What is ME/CFS?
ME/CFS stands for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome . It is a severe, complex, neuroimmunological multisystem disease with sometimes dramatic effects on daily life. An estimated 250,000 people are affected in Germany alone.
The disease is characterized by:
profound physical and mental exhaustion
Post-Exertional Malaise (PEM) – a dramatic deterioration after minimal exertion
“Brain Fog” – cognitive impairments
Sleep disorders
autonomic dysfunctions
Pain and susceptibility to infection
Practical example: The doctor who suddenly became a patient
Dr. Jana K. , 38, an internist at a hospital, returned to work after a viral infection – but something wasn't right. On her very first shift, she experienced heart palpitations, cognitive decline, and a sensitivity to light that she had never experienced before. Sleep didn't bring any relief.
After a day of advanced training, she completely collapsed. She lay in complete darkness for three days, unable to speak or tolerate any noise. Only after a year of misdiagnoses, misunderstanding, and withdrawal was she diagnosed with ME/CFS .
Today she lives with her parents, her license to practice medicine is suspended. A walk in the garden is the highlight of her daily life.
"I've lost my old life. But at least now I know I'm not imagining it."
History: From a “fashion disease” to neurological reality
ME/CFS is not a new phenomenon. Doctors described similar symptoms as early as the early 20th century. In the 1980s, it was considered a "yuppie disease" – a misconception that persists to this day. For a long time, ME/CFS was psychologized, trivialized, or ignored.
Today, the disease is classified by the WHO as neurological (ICD-10: G93.3). Yet many affected individuals continue to experience rejection, ignorance, and structural helplessness in the healthcare system.
Symptoms – more than just fatigue
ME/CFS is not exhaustion that improves with sleep. The central symptom is PEM—a post-exercise worsening that has a delayed onset and can last for days.
Typical symptoms:
physical weakness, muscle pain
cognitive disorders (word-finding problems, concentration gaps)
Sleep disturbances despite exhaustion
Sensitivity to stimuli (light, noise, touch)
Circulatory problems, especially when standing up
Practical example: The student who was “too lazy”
Luca , 16, was athletic, popular, and high-achieving – until a COVID infection changed everything. Afterward, he was constantly exhausted and could no longer concentrate. Teachers and classmates considered him lazy. His grades slipped. After months of medical odyssey and parental persistence, he was diagnosed with ME/CFS.
Today, Luca is homeschooled—15 minutes of study time, two hours of rest. Soccer is a thing of the past. Even meeting friends is too much for him.
"I haven't given up—I'm sick," says Luca. "But many people don't believe that because they can't see anything."
Causes – what’s behind them?
The exact cause is still unknown, but research has identified many pieces of the puzzle. ME/CFS often occurs after infections —EBV, influenza, COVID-19—or after a genetic predisposition or stress/immune overload.
Scientifically discussed:
Autoimmune reactions
chronic neuroinflammation
impaired energy metabolism (mitochondrial function)
Dysfunction of the autonomic nervous system
impaired blood distribution and cerebral circulation
Neuroscientific perspective
Studies show:
Neuroinflammation in the brainstem and thalamus
reduced blood flow in cognitive brain areas
changed activation of the Default Mode Network
impaired glucose metabolism
Autonomic dysregulation (e.g. in POTS)
ME/CFS and Long COVID – a new wave
Many people with long-COVID experience symptoms that are nearly identical to ME/CFS. Researchers believe the pandemic has created a large new patient group with similar problems: lack of care, social withdrawal, and stigma.
Perhaps Long COVID is the catalyst that ME/CFS has long needed to finally be taken seriously.
Diagnosis – a puzzle without markers
ME/CFS is currently a clinical diagnosis based on criteria such as the Canadian Consensus Criteria or the IOM definition. Biomarkers are still lacking, and many physicians are untrained. The path to diagnosis takes several years on average .
Important: Exclusion of other diseases is essential – without falling into the “psychological trap”.
Treatment – hope for stability
There is no cure , but there are strategies to improve quality of life. The most important one is pacing —the targeted avoidance of overload.
Further building blocks:
Sleep and pain therapy
Circulatory stabilization
Micronutrient therapy
Psychological support – not as “causal therapy”, but as stabilization aid
The previously recommended “Graded Exercise Therapy” (GET) is now considered harmful.
Practical example: The developer with the timer
Sven , 44, worked as an IT expert from home. After a bout of flu, he couldn't get back on his feet. Concentration became difficult, and exhaustion set in even while showering. At first, he thought it was burnout. But a normal workday ended with three days in bed.
Today, Sven lives by a timer: 90 minutes of screen time a day – monitored with a pulse oximeter and heart rate app. A normal shopping trip? Unthinkable. Friends? Too exhausting.
"I now live in a world with invisible barriers. And many people believe it's just their imagination."
Social dimension: The invisible suffering
ME/CFS not only leads to physical limitations, but also to massive social exclusion : no gainful employment, no social contacts, no participation.
Those affected report:
Rejection by doctors
Loss of friendships
financial hardship
Isolation due to sensitivity to stimuli
Suspicion (“You look healthy”)
Perspectives: Research. Recognition. Empathy.
What it takes:
Research – on causes, biomarkers and therapeutic approaches
Training – for doctors, experts, social welfare offices
Care centers – with interdisciplinary know-how
Solidarity – in society, media and politics
Help for those affected – addresses & links
Anyone suffering from ME/CFS needs guidance. Here are some reputable sources of support:
Self-help & information
Long Covid Germany – with ME/CFS information
Doctors & clinics with expertise
Charité Berlin – Institute of Medical Immunology (Post-COVID / ME/CFS Outpatient Clinic): https://cfc.charite.de
University Hospital Munich – ME/CFS / Long COVID consultation
Clinic for Neurology Leipzig – Special Outpatient Clinic for Neuroimmunological Diseases
Specialist list (maintained by those affected): https://cfs-hilfe.de/aerzte
Conclusion: The underestimated crisis
ME/CFS is not a psychological problem. It is a neurological-immunological systemic disease with massive consequences. It deserves research, attention, care—and respect.
Because those who fight lying down need a society that doesn’t look away.
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