This is a translated version of an article originally published in German language in February, 2023

It's the second day of the new year. A good time to talk about hopes and wishes.

Anna taps her chest with the flat of her hand, then points downwards with her index finger. The 41-year-old then makes a defensive gesture with her whole hand.

‘Don't let it get worse,’ translates Regine, Anna's mum.

Her daughter confirms with a quiet ‘Yes’. When Anna speaks, she doesn't say more than one or two syllables. She keeps her eyes closed for all but a few moments, the back of her chair tilted back at an angle.

Shortly afterwards, she needs a break. The conversation is exhausting her. She slowly gets up and takes careful steps back to her bed. She spends 90 per cent of the day lying. 

The reason for this has five letters: ME/CFS, short for myalgic encephalomyelitis/chronic fatigue syndrome. A chronic multi-system disease that can suddenly tear people from their previous lives, turning bundles of energy into care cases. ‘I've been dying every day for years’: That's how one severely affected person puts it, and that's how many feel.

Up to 400,000 sufferers – and then came corona

Estimates range from 70,000 to 400,000 sufferers in Germany, but because ME/CFS often follows a viral infection, COVID-19 has just added tens of thousands to the statistics. Some scientists even expect the number to double. Long-Covid is, as cynical as it sounds, still some kind of good news: it probably needed a pandemic to shed a little light on all those affected who have been living almost unnoticed in our neighbourhood for so long.

The moderately ill, who live with the incomprehension of colleagues and partners when they take time off work or need a two-hour break after coming back home from the supermarket. And the severely affected: The mum who gathers all her strength to drag herself to a parents' evening for her children at least once a year. The filmmaker who has travelled the world and now only struggles in her flat to endure the nerve pain, which she perceives as ‘electric shocks’, and whose heart rate and blood pressure skyrocket if she even tries to stand up. The people who live in dark rooms because they can't stand the light, and who desperately try to find a carer – or at least a palliative care doctor – in the small moments each day when they can use their mobile phone. 

It is estimated that six out of ten of those affected are unable to work, and one in four cannot leave their home. This is another reason why it is so easy to overlook them.

Our healthcare system lets these people fall through all the cracks. The structures have no answer to patients who are too ill for any hospital.

There are as many people affected as with multiple sclerosis, for which the care situation is also considered inadequate, and yet there are MS clinics, specialist practices and specialised care services. There is almost nothing for ME/CFS, although the disease has been known for decades. There is no cure and almost no research, there are hardly any specialists and no treatment centres. There is a lack of doctors who are prepared for visiting their patients at home and provide them with at least basic medical care. 

What there is: Patients with an almost complete lack of prospects. People whose diagnoses are disregarded by the authorities and who are sent to therapies that only make things worse. The story of ME/CFS can probably only be described as one of the biggest health scandals of our time.

Anyone who researches it will come across unbearable fates. In the worst cases, these are parents who are threatened with the withdrawal of custody by the authorities because they refuse treatment in order to protect their children from incorrect treatment. These are people who want to live, but who are denied care at home and every desperate, experimental attempt at therapy by doctors - and then, when the symptoms are no longer bearable, even assisted suicide, because all treatment options would first have to be exhausted.

The mean beast

Anna's medical history begins 20 years ago. She is 21, studying maths and physics, when she catches a kind of angina. Annoying, but harmless, she thinks. Only later would doctors suspect that Anna had contracted the Epstein-Barr virus. For weeks, the sporty student is unable to get on her feet.

It will pass, her doctor reassures her. Keep going, she advises, stay active, just don't let it get you down.

But it doesn't pass.

Despite severe exhaustion, Anna drags herself through her exams and continues for another semester until her intermediate diploma. ‘That made everything worse,’ says Regine, her mother. Every overexertion triggers a ‘crash’: Flu symptoms return, the headache becomes unbearable. Eventually, Regine gives up her business to care for her daughter with her husband.

It is only after three years that Anna receives the diagnosis that makes sense of everything: ME/CFS. A clinical presentation that has more than 200 symptoms: sufferers feel ill and exhausted, are sensitive to almost any kind of stimuli, have difficulty concentrating and finding words, their muscles spasm and their lymph nodes ache. Everyone suffers differently, but they have one main symptom in common: exercise intolerance. If they exceed their limits, a crash follows within 72 hours, possibly as a result of a disruption in muscular ion transport. The symptoms then worsen, often permanently. Doctors speak of PEM, Post Exertional Malaise – one sufferer simply calls it the ‘mean beast’.



Anna also encounters this beast when she is admitted to a clinic in Berlin in 2008. She has to take part in regular painting therapy and come to meals in communal rooms. It's all far too much, but the doctors and nursing staff don't understand this, perhaps they don't know the ‘beast’ yet. Instead of getting better, Anna gets worse and leaves the clinic early.

Since then, things have gone up and down in waves. During one episode, Anna is practically paralysed for three days until the rigidity finally lifts. The headache becomes a constant companion, a droning, sometimes roaring pain. 

Women fall ill more often

Three years of the Corona pandemic is unintentionally also a mass study of post-infectious diseases. What it shows is that they can affect anyone, but they affect women much more frequently. This is the case with Long-Covid, it has always been the case with ME/CFS – and that describes a part of the problem.

London, 1955: At the Royal Free Hospital, a mysterious outbreak of disease occurs among some 300 hospital staff. Many of them remain ill, sometimes for years. Doctors assume it is a chronic inflammation of the central nervous system, myalgic encephalomyelitis (‘ME’). 15 years later, however, two psychiatrists categorise the event in a completely different way: as mass hysteria. There was still no talk of gender-specific medicine, and other than the alleged female tendency towards hysteria, they could not explain why so many nurses fell ill, but only a few male colleagues. Terms such as ‘fatigue’ come from this tradition, often helplessly translated as ‘tiredness’ or ‘exhaustion syndrome’ – a trivialisation, because doesn't everyone feel exhausted sometimes?

Organic or psychological? Scholars are still arguing about this today, in ME/CFS as well as in Long-Covid, often on the backs of the patients.

It is not a dispute between medical specialities: There are psychiatrists who advocate an organic view and neurologists who consider everything to be a question of the psyche. Nor is it a battle for patients. Because ‘unfortunately, it's more the case that nobody wants these patients,’ says Martin Walter, Head of the Department of Psychiatry and Psychotherapy at the University of Jena. As irreconcilable as parts of society are about the coronavirus policy, the professor, who initiated the first Long-Covid Congress in Germany in November 2022, has also observed a ‘radicalisation in the scientific debate’. Extreme positions, criticises Walter, are overemphasised and thus create the basis for the stigmatisation of those affected – positions such as that an illness must be psychological or psychologically caused and treated accordingly if no neurological findings can be determined using conventional methods.

Walter was probably thinking primarily of Christoph Kleinschnitz, head of neurology at Essen University Hospital and probably the loudest proponent of this school of thought, even though he says he is not an expert on ME/CFS. In fact, it is still not clear exactly how the disease develops. Doctors find nothing in their patients using standard tests – but more refined diagnostic procedures provide findings such as increased immune activity, inflammatory processes, viral residues or autoantibodies in the blood. ‘I lack plausibility,’ says Kleinschnitz. ‘The findings don't fit the clinical picture front and centre, they can't explain the patient's situation. That's why they are smoke and mirrors with no real pathological relevance.’ He says of those affected: ‘There are people with depression literally written all over their faces.’

The debate regularly escalates on Twitter. The seriously ill, many of whom are only able to socialise via online media, react angrily to ‘CK from Essen’, who often does not acknowledge their arguments. Kleinschnitz, the doctor, in turn misses few opportunities to provoke those affected.‘Where do you actually get the strength to post?’, he sometimes taunts an ME/CFS sufferer. [Addendum: Professor Kleinschnitz has since deleted the quoted tweet. mr, 10.02.2023]

In terms of content, however, Kleinschnitz represents a minority opinion.Most scientists now consider the physical causes of ME/CFS to be certain. This is how the current publications of the German Medical Association (Bundesärztekammer), the German National Robert Koch Institute, the British National Institute for Health and Care Excellence (NICE) and the US Centre for Disease Control and Prevention (CDC) read. US immunologist Akiko Iwasaki names four possible mechanisms as the cause of post infectious diseases: A persistent ‘viral reservoir’ after an acute infection, autoimmune processes, tissue damage as a result of the initial illness and reactivated viruses from previous infections. 

The World Health Organisation classified ME/CFS as a neurological and therefore organic disease as early as 1969 under the code G93.3. In 1994, a German government commission criticised the fact that doctors were categorising chronic fatigue too lightly as a ‘psychosomatic-psychiatric disorder’ and that those affected saw their only way out in risky, experimental therapies. To this day, nothing has changed, and sufferers are still fighting against the doubt that they are imagining things. With employers, but above all with the authorities, who have to decide on degrees of disability and care levels – and repeatedly refuse help because they don't really believe in an illness. The scandal does not lie in the fact that scientists are arguing about the correct view of a complex clinical picture, but in the way those affected are treated.

Fear of the ‘F diagnosis’

A whole series of official documents available to the author of this article substantiate their accusations: the expert report that reinterprets the medical diagnosis of ME/CFS, which is peppered with organic findings, as a ‘severe personality disorder’. The decision of a pension office whose medical officer classifies ME/CFS as a mental impairment and – capitalised – ‘NOT’ as a physical impairment, contrary to the official classification, and who is even amused by the fact that the applicant, who allegedly suffers from exhaustion, managed to submit a long letter of objection. The expert opinion, which ‘urgently’ accuses a bedridden man of secretly doing sport because his muscles are not yet completely flaccid – and recommends that exercise therapy be ordered by the court against the patient's will.

Organic or psychological? A big difference for those affected, especially when it comes to deciding on the treatment approach. An ‘F diagnosis’ is feared, because F is the key to mental illness. GPs impose it for a variety of reasons: Because they don't know ME/CFS, don't recognise it – or misjudge it. Because the F code allows them to provide ‘basic psychosomatic care’, i.e. they are remunerated if they take more time than usual to talk to their patient. And some of them probably also because they want to help: Sometimes it is easier to get sick pay or a pension approved with an ‘F diagnosis’ such as severe depression than with a clinical picture as mysterious as ME/CFS.

The problem is what follows the diagnosis. Because what may help with depression can be completely wrong for ME/CFS patients. And indeed: it often goes wrong.

To date, activation therapy has been the common response to ME/CFS patients. The therapeutic standard was set by a group of British psychiatrists at a time when the theory of a psychological cause was not yet a minority opinion. In 2011, they published the results of their ‘PACE’ trial in the renowned medical journal The Lancet and recommended Graded Exercise Therapy, or GET for short – a gradual increase in activity.

Among patient organisations, GET is synonymous with the most severe abuse. In countless testimonials, patients describe how the therapy triggered crashes and led to permanent damage. GET ignores stress limits, which in some cases can be exceeded just by travelling to the therapist, and thus only helps PEM, the ‘beast’.

The PACE study is anything but a methodological masterpiece: the researchers concealed their connections to disability insurance from the test subjects, raved about GET even before the treatment and withheld data which – when it became public after a court order – did not confirm the described effects of the therapy.In addition, the psychiatrists omitted severely ill patients and recruited patients who suffered from various symptoms of fatigue but would not be diagnosed with ME/CFS according to today's criteria. The study therefore says very little about many ME/CFS sufferers – yet it is used as a basis for sending them to GET. Not always voluntarily.

This in turn has a lot to do with the German State Pension Insurance (Deutsche Rentenversicherung). It takes the liberty of deviating from the official classification and categorising ME/CFS as a mental disorder. This could change – new guidelines should be available ‘in the near future’ and then, at least, take into account the latest research, as pension insurance and the Federal Ministry of Health state almost verbatim. Until then, however, ME/CFS is considered a mental disorder by the German pension system. And if general practitioners have also resorted to the ‘F’ key, treatment on the ‘psycho track’ is predetermined. The consequences are enormous: if those affected apply for a pension due to illness, they are often first sent to a cure – the ‘rehabilitation before pension’ principle – where they are obliged to undergo rigid activation therapies as if there were no such thing as a beast.

This is also documented. Like the report from a rehabilitation centre, which confirms everything: That the patient was suffering from ME/CFS including PEM, that her condition had measurably worsened after the rehab exercise programmes.

In the end, however, the doctor recommends sports therapy. One wonders whether this is just helplessness – or already an act of bodily harm.

Survival strategy or a guide to chronification?

Crashes characterise half of Anna's year at some point. Once a keen mountaineer, she can no longer climb stairs. For more than ten years, she has only walked a few steps in her flat, wearing a sleep mask over her eyes in bad times to block out light stimuli. She meticulously plans every trip to the bathroom and needs a break after three minutes. The last little trip in her wheelchair was years ago.

On the shelves in her living room are the physics books from her studies, as well as a few Sex and the City DVDs. They are more mementos than items of daily use, as Anna has neither a television nor a DVD player, and her pounding headache is already rebelling against reading books. Listening is better. There is a radio on the sideboard next to the bed, where Deutschlandfunk broadcasts the news from outside.

Anna is one of the most severely affected people with ME/CFS in Germany. To avoid new crashes, she, like many others, relies on ‘pacing’ – a technique for recognising your own stress limit and always staying below it. Not a therapy, but a survival strategy. 

For Peter Henningsen, this of all things is a ‘guide to chronification’. The Munich professor, one of the leading German psychosomatics experts, stands for a school of thought according to which those affected may underestimate their ability to perform in anticipation of negative consequences. Those who underchallenge themselves weaken themselves – a vicious circle.

The fact that patients should be as active as possible is not controversial. The question is: does the student who wants to take off in life really need to be “activated”? The bedridden mother who longs to be able to participate more in her children's lives? Ultimately, it is also a question of who knows best what is good: the patient themselves – or their therapist.

The fact that Henningsen considers GET to be a good approach has earned him a very bad reputation among patient associations. Anyone who talks to him will not meet a doctor who thinks patients' suffering is imaginary. GET, he explains, should “actually be like pacing”, i.e. individually adapted to the level of exertion – but with the fixed goal of slowly increasing activity. Henningsen only talks about patients who are able to come to therapy themselves. Activation can help many of them, he is convinced.

However, what Henningsen describes has little in common with the reality of life for those affected. In numerous reports, they describe how they experience therapy in rehabilitation clinics: As a rigid program that forces even severely affected people beyond their limits – and thus harms them. Nevertheless, many feel compelled to participate in order not to jeopardize their pension or sickness benefit entitlements. “Rehab” has become an irritant for them.

“Trend reversal”

But there are also other experiences. “We wouldn't have made it without rehab,” says Maria, a small woman with an infectious zest for action. She lives in southern Germany and actually goes by a different name. With her daughter, let's call her Hannah, she has experienced everything that so many people report: The struggle for recognition, the attempts at therapy that made everything worse.

Hannah is ten, a passionate ballet dancer, when an infection throws her off track. Four months and intensive physiotherapy sessions later, she can no longer walk ten steps and is occasionally confined to a wheelchair. When she is denied part-time lessons, the girl is faced with the choice of forcing herself to go to school full-time or undergo inpatient rehabilitation. Torn by the worry that she would deteriorate again, her parents decide to take her to Belgium, where the family is living at the time. 

But Hannah is lucky. At the rehab clinic, she meets therapists who are familiar with ME/CFS – and who apparently manage to dose the program correctly so that she doesn't crash her limits. The rehab doesn't work miracles, but it does "reverse the trend", Maria believes. After eight months in the clinic, her daughter can walk 300 meters again. Since then, things have been improving in small steps. Today, Hannah is 19, a certain weakness is still noticeable, but she has graduated from high school, started university - and has just celebrated her first ballet performance. 80 percent of her performance ability is back. 

It's one of the rare positive reports of rehabilitation, and it also shows how spectacularly care can fail: on the one hand, there are the many who suffer damage in rehab. On the other hand, there are those who would benefit from well-done rehab. But they are hardly open to trying it because there are far too many bad experiences and because they cannot find a clinic that guarantees ME/CFS-appropriate treatment. 

Recommendation with "high potential for bias"

Mental or organic, GET or pacing: the old controversies are once again gripping German healthcare policy with great force these weeks: in the struggle for a report that is supposed to be science and yet is above all one thing – politics.

In 2021, the German Federal Ministry of Health commissioned the independent Institute for Quality and Efficiency in Healthcare (IQWiG) to summarize the knowledge about ME/CFS. It is not actually a treatment recommendation, but the report will be read as such as long as much is so controversial and the medical societies cannot agree on a medical guideline on ME/CFS.

The report is due to be published in a few weeks, while professors are fighting for influence in the background and those affected - like Anna's family - are sending demands on postcards. The reason for this was the draft report that IQWiG published on the Internet for comment in October. In it, the controversial GET activation therapy was presented in a comparatively positive light, particularly on the basis of the flawed PACE study.

Although the Institute acknowledges a "high potential for distortion", it ultimately considers it to be a piece of science, unlike the reports on consequential damage caused by GET. Those affected reacted indignantly. Jena psychiatry professor Martin Walter shares their criticism. The Institute had not analyzed the study situation critically enough, underestimated harmful side effects and overestimated the possible benefits: "The IQWiG report is not as cautious as the uncertain data situation and the indications of a harmful effect would require." What is becoming apparent: If IQWiG sticks to its assessment, it could lay the foundation for further incorrect treatments. Severely ill ME/CFS patients would probably also be sent to potentially harmful treatments in the future. [Addendum: IQWiG presented its final report in April 2023. It has changed significantly compared to the draft and states that there is a lack of evidence for the benefit of GET, but that a deterioration in the health of ME/CFS patients cannot be ruled out. mr, May 2024]

Those affected no longer expect much good from politicians anyway. The disappointments are too great. In 2021, they were still celebrating the coalition agreement of the German coalition parties as a great success, with the Social Democrats, the Greens and the Liberals – finally – announcing promising initiatives: "To further research and ensure needs-based care for the long-term consequences of Covid19 and for chronic fatigue syndrome (ME/CFS), we are creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics," the contract states. In September 2022, Minister of Health Karl Lauterbach also tweeted compassionately: "No one who has the disease could have imagined the suffering and extent of the lost quality of life."