Beth Dobbin: Sick athlete talks about ME/CFS

In 2021, Beth Dobbin made it to the semifinals of the 200 meters at the Tokyo Olympics. She ran the course in 22.85 seconds, finished fifth and missed the final.

Today she spends more than 22 hours a day in bed, she tells the BBC in an interview. Dobbin suffers from ME/CFS. In Germany, it is estimated that around 650,000 people suffer from ME/CFS, and in Great Britain there are more than 400,000 cases.

The abbreviation stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is a severe, chronic multisystem disease. Those affected usually suffer from pain, severe sleep disorders and other complaints. An important symptom is post-exertional malaise (PEM), the delayed deterioration of the condition after excessive stress.

Dobbin discusses this deterioration in his condition in the interview: »I did small activities, such as a blood test at the doctor, and then lay in bed for months. This interview, in which I speak for 30 minutes, can affect me in 2027." But she wants to raise awareness about the disease.

During subsequent competitions she felt dizzy and once lost feeling in her legs at the starting block. It was “a hellish year,” she told the BBC at the time. Eventually, several doctors told her that she had ME/CFS.

Dobbin clearly rejects the term CFS for “chronic fatigue syndrome”. As an athlete, she knows fatigue - colloquially, exhaustion. "I wish it was just fatigue, it would be a walk," she tells the BBC. "It's so much more." Instead, it's as if her body is failing. "It feels like you're going to die in a few days."

The diagnosis of ME/CFS is made based on clinical criteria; there is currently no biomarker. This is probably why the causes of ME/CFS are controversially discussed in medicine. The main issue is what role the psyche could play in the development of the disease. In a SPIEGEL interview, psychotherapist Bettina Grande criticized: "The mere fact that the diagnostics did not produce any abnormal findings is not enough to classify complaints as psychosomatic," said Grande. But that's exactly what happens. Behavior on the part of those affected that is completely appropriate given the illness is reinterpreted in terms of psychosomatics. "When the body is out of control due to ME/CFS - things suddenly fall out of your hand, a leg simply buckles - and the person is understandably worried, they are accused of being overly focused on their symptoms."

Athlete Beth Dobbin says she has heard from many other sufferers that they are not believed or that people think they are lazy. »That never happened to me. Because why should an athlete suddenly stop after 20 years? That's why she wanted to talk about her illness.

There is currently no cure for ME/CFS. Doctors can try out some therapies and medications together with those affected, which help some sufferers, but the scientific evidence for all procedures is low - which is mainly due to the fact that for a long time there was hardly any research into ME/CFS. “The chance that those affected will recover on their own is very small,” said Carmen Scheibebogen, a doctor researching at the Berlin Charité, to SPIEGEL. She complained that many sufferers do not even receive generally available therapies. »You suffer from severe pain, severe sleep or circulatory disorders, and these symptoms can be alleviated. But often not even that happens.«