Sabine is a doctor, fully resilient, has two adult children. Then she gets sick – and no longer healthy: Chronic Fatigue Syndrome has changed her life. Long-Covid sufferers with fatigue and pain lasting months face a similar fate.
Dancing, doing endurance sports, yoga, playing the piano, putting up with the daily hospital stress and not shying away from any challenge – for Sabine Maier (anonymous), a doctor in her late 40s, this was completely normal until a few years ago. The mother of two adult children felt absolutely physically fit.
After several infections, most recently a severe flu, she fell ill permanently. That was in 2016. “After that, I couldn’t get up at all, I wasn’t resilient anymore, I could only walk shorter distances,” Sabine describes the beginning of ME/CFS.
This abbreviation stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, a severe, long-term multisystem disease with a complex, severe clinical picture. More than 300,000 people are affected in Germany, with a strong upward trend in the context of Long-Covid. Because Corona can probably also influence the immune system in such a way that ME/CFS develops.
A few years earlier, Sabine felt extremely exhausted after a severe infection and was in pain after every effort. But she didn’t take it seriously and continued to work. “I was used to always being ready to perform,” she emphasizes.
But more and more often she had to stay at home for two or three days because she couldn’t take it anymore. After the series of infections in 2016, her powers had almost completely disappeared. Since then she has been unable to work – because of the complex symptoms, which worsen after any physical or mental exertion. Even a short walk can result in Sabine being almost too weak for mundane activities such as personal hygiene the next day.
Fatigue accounts for only part of the symptoms of ME/CFS. Pain and malaise are typical of ME/CFS. The doctor suffers from swollen lymph nodes, a sore throat like a flu infection, sometimes there is a slight fever for a few days.
Headaches are particularly tormenting after mental exertion, and there are also pronounced concentration problems. “If I read a few pages of a novel, I get a headache. In addition, I have to constantly scroll back to connect the names with the people, to remember the plot,” she describes the symptoms. Medical articles that she used to understand after reading them once, now she has to go through them six to eight times, with many breaks, in order to grasp something.
Because of all these massive problems, Sabine Maier consulted various doctors. They guessed burnout first. But she was convinced that she wasn’t suffering from mental exhaustion, which is what burnout means. The physical symptoms were far too pronounced for that.
In addition, there was a worsening of the symptoms after the usual sports therapy in burnout therapy. Sabine therefore had an extensive laboratory carried out in a private medical practice. It turned out that a whole series of immunological parameters were abnormally altered in her. However, they did not point to a classic autoimmune disease such as rheumatism.
Through her own research, Sabine came across the disease ME/CFS. “I had never heard of it before, not even in my medical studies, not in my residency training,” she states, also addressing the big problem that many doctors do not even know that ME/CFS exists and what the disease is means.
She then contacted the Charité fatigue center, got an appointment and was examined further. Among other things, an antibody deficiency was found, which also affects many other ME/CFS patients. In the case of Sabine Maier, for example, part of the IgA is missing. These are certain proteins that, among other things, are the first line of defense against respiratory infections on the upper mucous membranes. If there is a lack of them, colds, sore throats and coughs are particularly common. In addition, other special immunological values were altered, as is often the case with ME/CFS.
The Charité experts confirmed Sabine’s suspicion – diagnosis ME/CFS. First of all, she was glad that she finally knew what was going on with her. Unfortunately, the Charité’s fatigue center is so overloaded that only an initial diagnosis is possible here. Further treatment must take place in the established area. However, there are hardly any corresponding contact points and specialized doctors with knowledge of the immunological processes in ME/CFS in Germany.
“So there is a high risk of consulting a doctor who has outdated knowledge and assumes that ME/CFS is a psychosomatic illness,” she describes the problem many patients have. ME/CFS is elusive and most physicians have little experience with it.
There have been groundbreaking scientific findings in recent years, for example from Stanford. Scientists were able to prove here that the blood cells of sick people have less energy available to cope with a saline solution in their environment, i.e. they are more “exhausted” than the blood cells of healthy people.
A German research group used fluorescence microscopy to discover that in ME/CFS, the energy powerhouses in the cells lose structure and no longer function properly. This is an effect that can even be transferred to cells in a cell culture through the blood serum of patients. The mitochondria produce too little ATP (adenosine triphosphate), which acts as fuel for the cells, so to speak.
Both studies thus make the mechanism of ME/CFS clear: on the one hand, that blood cells are exhausted more quickly, on the other hand, the cause. The symptoms of long-Covid are very similar to those of ME/CFS, so researchers now assume that similar disease mechanisms play a role in both diseases.
The basic research on ME/CFS is thus progressing. “It shows that ME/CFS is a physical disease that happens at the level of cellular metabolism,” summarizes Sabine. Against this background, it is also understandable why this disease can ultimately express itself in every area of the body and has a variety of symptoms.
There are different stages – from a mild to a severe form, whereby in some cases those affected can no longer chew and swallow themselves, but are bedridden and dependent on artificial nutrition. Sabine Maier is “only” moderately affected, still has an energy level of about 30 percent compared to healthy times and is therefore no longer able to work.
A targeted cure for ME/CFS is still not possible today, only treatment of the symptoms – for example painkillers and rest that is adapted to the physical condition. Sports therapy with increasing stress is not suitable – unlike, for example, with psychosomatic illnesses or tumor fatigue with cancer or as part of chemotherapy.
Efforts, both physical and mental, should never exceed the energy limits in ME/CFS as a result of a viral disease, as was the case with Sabine. Otherwise the body can suffer permanent damage, reports the doctor. Typically, this worsening of symptoms – also called PEM – does not follow the activity immediately, but 24 to 48 hours later. Then when the body tries to replenish its energy reserves.
One way to support cell metabolism in CFS is to take certain dietary supplements, such as those recommended by the Charité: Coenzyme Q10 and ribose, a sugar that is important for the formation of energy carriers such as ATP. It is also possible to treat individual symptoms such as pain. However, this does not mean a cure.
After her examinations in the Charité, Sabine Maier tried to cope with this symptomatic therapy and to achieve an improvement. After two years, however, her condition had not changed. She applied for a pension, sought advice from the self-help association Fatigatio e. V., recommended to her by the Charité.
She quickly realized that without legal counsel she would find herself in an unimaginable situation – as a patient whose illness is also not resilient. She gives an example: “One is psychiatric, it is not recognized that, according to more recent studies, CFS is a physical illness and that the Charité has confirmed this illness in me. I had to go to an appraiser who wasn’t interested, but who worked through catalogs of questions, about depression, for example. Then he stated that I’m not depressed, which he didn’t understand. The interrogations and investigations went on, for hours. I kept asking for breaks because I was getting worse and worse.
Everything was far beyond my strength. But all they said was: As long as you can still sit here and talk to me, you can still – and if you go out, that means you have terminated the investigation. When you are exhausted, I decide!”
After this assessment, she collapsed completely and had to be hospitalized. Sabine was bedridden and even too weak to chew. She collapsed while sitting. It took two weeks before she could at least chew again, before she could sit for more than five minutes again, another three months.
This dimension of ME/CFS may not be well known to the general public, although many patients report it as a result of exceeding the reduced performance limits of those affected.
Since this decompensation – also called a “crash” by some patients – Sabine Maier has been in need of care and is severely disabled. She continues to suffer from a constant feeling of illness, pronounced weakness and severe pain. She can no longer take care of herself.
“I could never have imagined that at my age I would have to apply for a severe disability or nursing degree. That was unthinkable for me – now I’m in this situation, I realized that I need support.
In addition, her pension application is still pending, with which she is also supported by a lawyer. She herself could not manage the complex procedure, that would overwhelm her strength. She knows from the self-help group that most of the others have to experience the same thing. Nothing works without a lawyer and without legal protection insurance she would have been completely lost, she emphasizes, also as advice to others.
Sabine Maier had high hopes for new guidelines with treatment recommendations for ME/CFS, the first draft of which had been published in Great Britain. Because here it was stated for the first time that sports therapy can be harmful in this context.
Psychotherapy is also no longer recommended in the paper as before, but only if depression occurs as a result of the serious illness in order to cope with the illness. She sees the role of psychotherapy as similar to that in oncology: Here, psycho-oncology has a fixed position in overcoming the disease, but nobody would think of trying to cure the tumor with psychotherapy.
The publication of the final version of the guidelines was scheduled for August 2021. However, it was postponed “because there was a dispute between the advocates of psychotherapy and the committees that rightly rated the old studies as ineffective and outdated,” reports the doctor.
Nevertheless, she expects a boost in terms of research and thus also a causal therapy for ME/CFS: Because in the context of Long-Covid, a not inconsiderable proportion of patients develop ME/CFS. So there will be more and more people affected in the future. The research focus will therefore have to be on ME/CFS.
“It’s about the generation of top performers in our society. We cannot offer any healing therapy to these people at this time. Standard rehab procedures that fail to deal with ME/CFS can, in turn, do harm.”
ME/CFS means no longer being able to live your previous life, says Sabine Maier. There are a lot of things to step back from – work, validation, fun. She very much regrets that her family always has to consider her and that she cannot take part in joint activities.
She is grateful that despite everything, her two children and her partner support and help her wherever possible. “But it’s not easy, although I’m not naturally a slouch person. My work was the center of my fulfilling life. I liked to go dancing, I played the piano for hours. Today I’m watching a film about dancing and playing the piano for five minutes to keep from forgetting it completely. Work has become impossible for me.”
These are bitter moments, but she has learned to focus her thoughts on what is going well – there is nothing else left. Sabine does not give up hope that one day there will be a therapy that really helps. And at the moment there are at least beginnings to do so.
