ME / CFS: »This disease should be brought into the public eye«

Created: 01/05/2022, 10:24 AM

In April 2021 Andrea Lingg had a difficult time: “I had no strength, not to move, not to listen, not to speak, not to open my eyes.

Everything hurt, I felt sick, couldn't sleep.

Not at night and not during the day. "

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Andrea Lingg from Sonthofen has been suffering from myalgic encephalomyelitis / chronic fatigue syndrome since a corona infection.

A story of suffering.

Sonthofen - Before her illness, the physiotherapist Andrea Lingg (46) was very athletic.

She crossed the Alps by bike and worked as a hiking guide.

Today she can hardly leave the apartment.

The diagnosis: myalgic encephalomyelitis / chronic fatigue syndrome.

The complicated name stands for a complex, so far incurable disease.

Those affected are often not taken seriously, misdiagnosed and treated incorrectly.

Andrea Lingg also went through a long path of suffering that continues to this day.

With her story, she wants to "finally bring this serious illness into the public eye so that the sick can finally get support and recognition."

It all started with Corona

In spring 2020 - the first corona wave is currently in full swing - Andrea Lingg becomes infected with Covid-19. The course is moderate. In addition to fever, headache and body aches, there is a loss of smell and taste. After four weeks at home, the physiotherapist returns to work. “I was able to work, but I didn't feel healthy,” Lingg recalls.

During a walk, her heart rate rises to 170, she has trouble breathing, and she feels sick.

The exercise ECG at the family doctor's is abnormal.

A cardiologist finds no abnormalities.

A long-term ECG remains without results.

The doctor considers sinus tachycardia, i.e. an increased heart rate of more than 100 beats per minute, to be harmless.

But the condition of the 46-year-old is not improving.

Again and again she experiences attacks of severe nausea, chills, palpitations, shortness of breath and weakness.

Andrea Lingg used to be very active.

She crossed the Alps by bike and worked as a hiking guide.

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Palpitations when brushing your teeth

“She slowly tried to become more productive again with short walks and exercises, but the symptoms remained the same.

In the summer she came to Pfronten for the post-Covid rehab, "says Lingg's wife Anja Struhtz," but here, too, the post-viral symptoms could not be assigned. "

Even everyday activities are increasingly leading to overload: "I already had an abnormal racing heart while brushing my teeth, the pulse rose to over 150," says Lingg.

Despite having difficulty breathing, weakness and nausea, she begins to work again.

What follows is a total collapse.

“After that I had to stay in bed for two weeks.

Nothing went anymore "

A blood sample, the ultrasound of all organs and another long-term EGK remain without results.

“They told me I was healthy.” Andrea Lingg is already in such bad shape that she can no longer sit.

A good year after the corona infection, a doctor in Bad Waldsee finally made the diagnosis: chronic fatigue syndrome.

200,000 people are affected

This disease was classified as a neurological disease by the World Health Organization (WHO) as early as 1969.

In Germany, an estimated 250,000 people including 40,000 children suffer from ME / CFS.

Myalgic encephalomyelitis / chronic fatigue syndrome is not a rare disease and it has not only appeared since Corona.

ME / CFS are often triggered by viral diseases, such as the Epstein-Barr virus, also known as glandular fever.

Women are three times more likely to have ME / CFS than men.

Those affected suffer from flu-like symptoms such as a sore throat, fever and swollen lymph nodes with extreme exhaustion, from cardiovascular complaints such as rapid heartbeat, dizziness and fluctuations in blood pressure.

Speech, concentration and memory disorders can occur, muscle, joint and limb pain as well as severe sleep disorders.

Post exertional malaise

The insidious thing about it: With every overexertion that results in a crash, i.e. the worsening of all symptoms, the stress tolerance of the person concerned becomes somewhat lower. A downward spiral. Depending on the severity, just sitting down or talking for 15 minutes can be too much. In the worst case, those affected even have to be fed artificially.

The deterioration in condition (crash) after physical or mental stress occurs with a delay of 24 to 48 hours.

It can be difficult for sufferers and doctors to make a connection.

“How do you know that the walk two days ago is to blame for the sudden deterioration,” says Anja Struhtz.

The delayed crash after exercise is called "post exertional malaise", or PEM for short, and is decisive for the diagnosis according to the "Canadian Consensus Criteria".

Hardly any research for 50 years

Torben Elbers, spokesman for the German Society for ME / CFS reports: "It often takes years to get a diagnosis." Because a biomarker has not yet been found.

This means that blood values ​​and medical findings are normal, even though those affected are sick.

There has been little research into ME / CFS for decades.

Above all, biomedical and clinical research has been severely neglected, as there is hardly any research funding, according to Elbers, "since ME / CFS has been ignored in recent decades, medicine today is largely at a loss when it comes to Long Covid".

In January 2021, Andrea Lingg also left the LMU's corona aftercare in Munich at a loss.

“So far nothing is worrying, all of my symptoms were told to me that they were very pronounced,” she recalls, “did you believe me?

I dont know..."

Misdiagnosed as mentally ill

Without biomarkers, the disease has been classified as a psychological problem over the years.

This is a common “reflex” in medicine, explains Elbers.

The unfortunate choice of the term "chronic fatigue syndrome" also gives the impression that those affected are simply tired, depressed or even lazy.

A study carried out in 2011 claims to have proven that those affected can benefit from activation therapy with sport and exercise, such as that used for depression and burn-out.

"This study is very problematic and shows considerable technical deficiencies," says Torben Elbers, "for example, the criteria for recovery were retrospectively lowered to such an extent that 13 percent of the test subjects were considered cured with their initial symptoms.

Many doctors still prescribe activation and stick to a psychological diagnosis.

Bedridden after crash

Andrea Lingg also had this experience.

After another surge in the spring of 2021 - Lingg can no longer eat independently and is bedridden - the 46-year-old has to go to Murnau and take part in the Post / Long Covid rehab program on the instructions of her professional association.

“At the final interview, it was said that I was healthy, that I could do anything, that I was just idle and lazy,” recalls Lingg, “I had to sign a final psychological diagnosis.

The CFS diagnosis by the doctor in Bad Waldsee was ignored.

I was asked if he was a doctor at all. "

In Germany, Prof. Dr.

Carmen Scheibenbogen as a specialist in ME / CFS.

Your ME / CFS outpatient clinic at the Charité in Berlin is the only point of contact for affected adults.

There is only one outpatient clinic in Munich for children and adolescents, headed by Prof. Behrends.

Hearing in the Bundestag

"You have to educate and sensitize", appeals Torben Elbers from the German Society for ME / CFS, "Doctors, offices and experts simply don't know ME / CFS."

This means that those affected are not awarded a disability pension or a degree of care, for example, therapies have to be paid for out of pocket.

The German Society for ME / CFS has therefore set itself the task of educating and improving the care of those affected.

A petition for the inclusion of ME / CFS in the service area of ​​the statutory health insurance for outpatient specialist medical care, as well as for investments in biomedical research, recently won over 50,000 supporters.

There will therefore be a hearing in the Bundestag.

ME / CFS is now part of the new coalition agreement

"The German Society for ME / CFS and Long Covid Germany have worked together in recent months to bring ME / CFS and Long Covid into the coalition agreement," says Elbers. With success. "ME / CFS is part of the coalition agreement of a German federal government for the first time." A nationwide network of competence centers and interdisciplinary outpatient clinics is to be created.

In the meantime, the National Institute for Health and Care Excellence in Great Britain has also published new ME / CFS guidelines that will also point the way for Germany.

The new guidelines explicitly discourage psychosocial explanatory models and activating therapies.

Instead, “pacing” is recommended, which means adhering to energy and exercise limits in order to avoid the flare-up of symptoms after activity.

Pacing: allocate energy reserves

“Activating therapies are very harmful for ME / CFS patients and can lead to complete bed rest.

My wife had to experience firsthand that many doctors do not have this knowledge.

The existing findings were not taken seriously and they were labeled as depressive and mentally ill, ”says Anja Struhtz, annoyed.

And Andrea Lingg adds that a doctor recently told her that ME / CFS was “nothing specific”.

Education urgently needed

The fact that the chronic fatigue syndrome has meanwhile moved more into the focus of attention - not least because of the corona pandemic - Professor Scheibenbogen from the Charité visited Markus Lanz on ZDF in the summer and emphasized the harmfulness of activation therapy, the broadcaster "Arte" a 50-minute documentary about the state of research and the suffering of those affected and even included the new federal government ME / CFS in the coalition agreement, should not hide the fact that the disease has not yet reached "mainstream medicine" .

"ME / CFS must be recognized much earlier by all doctors and also by the Post Covid ambulances," appeals Anja Struhtz, "but above all the patients must be taken seriously."

Then, she is certain, many difficult courses could be prevented.