Long Covid recovery story by Jann Zosso

Unexplained symptoms

It was the day after ice hockey training when—three weeks after my second supposedly overcome Covid-19 infection—I woke up again feeling ill. At the time, I thought it was simply another viral infection. But it came at an extremely inconvenient moment: I was in the final phase of my PhD in physics. After half a day of rest, I felt a little better again and sat back down in front of my 500-page document. Over the following weeks, these episodes of illness became more frequent, often after physical exertion such as jogging, yoga or strength training, which would normally have been an indispensable counterbalance to the intellectual work at my computer. As the submission deadline approached, new symptoms appeared that I had never experienced before. In particular, recurring episodes of a leaden feeling of heaviness throughout my entire body began to worry me; sudden dizziness and severe “brain fog” made it difficult to think, and flickering in front of my eyes sometimes made it impossible even to read. Finishing my PhD in this condition demanded a great deal from me.

Diagnosis: Long Covid / Post-COVID Syndrome

But finally, the thesis was submitted and I could turn my attention to my health. At the beginning of January 2024, with a full A4 page of symptoms that had refused to improve for months, I went to see my GP. After numerous and extensive medical examinations to rule out other conditions, including an MRI scan of my brain, I was eventually diagnosed with Long Covid (Post-COVID Syndrome). Almost a year earlier, I had been infected with the COVID-19 virus for the first time. The acute, moderately severe phase of the illness was followed by a diffuse pressure in my chest and back, which disappeared again after a negative cardiological examination and some time. Only after my second infection, at the end of September, did the pressure and pain in my chest return, together with the symptoms described above, as well as abdominal problems, sleep problems, night sweats and a general hypersensitivity to external stimuli. Together with an abnormal change in heart rate after standing up from a lying position, the diagnosis was as clear as it could be.

The downward spiral begins

The initial relief of finally having a name for the chaos in my body quickly disappeared. I became aware of the prevailing uncertainty surrounding Long Covid and the almost complete lack of established knowledge about it. My first attempts to recover from the illness after finishing my PhD also failed miserably. I would repeatedly feel reasonably well, which tempted me to do things that would normally give me a lot of energy. I was enormously looking forward, for example, to our planned winter holidays, where I imagined properly relaxing by reading in the warm living room, doing some gentle cross-country skiing and spending cosy evenings together. But apparently, I was no longer able to assess my own body at all. Again and again, and increasingly often, my system collapsed after what seemed like very minor exertion, and the symptoms returned with full force. Soon even playing a board game with others or going to the sauna was too much. I did not have the illness under control, and none of my tried-and-tested remedies seemed to help in the slightest. The only established recommendation from official sources seemed to be that overexertion of the body should be avoided at all costs. Repeated relapses, so-called “crashes” (also PEM, for “post- exertional malaise”), were said to be responsible for a long-term deterioration in health and could cause irreversible damage to the body, accompanied by a chronification of the symptoms. The weeks went by, and instead of the recovery I had hoped for through a comprehensive reduction in stress and exertion, my condition continued to deteriorate unchecked.

I heard about an acquaintance who was doing much better again after suffering from Long Covid, and that gave me a small spark of hope. But the stories of people who could still find no way out even after years far outweighed them. My GP was also unable to show me a path towards recovery. I always felt understood and supported by her, but my mobility soon became so limited that travelling to the prescribed physiotherapy and occupational therapy sessions was no longer possible at all. And once home visits could finally be organised, it was questionable whether these therapies were really beneficial in my condition or, on the contrary, potentially harmful. A profound helplessness spread through me and my family. New symptoms also kept joining the existing ones. After physical exertion, I experienced a strange fluttering and tingling sensation in the muscles I had used, which could become extremely unpleasant. On top of that came a constant hammering in my head, an increased intolerance to histamine-rich foods and persistent sleep problems. Together with increasingly intense crashes, during which flu-like states alternated with extreme heaviness and exhaustion – the so-called “fatigue” – my fear steadily grew that this must be a very serious illness. I began to suspect that my path to recovery would probably be very long and arduous. Increasingly often, I doubted whether I would ever recover at all.

I give myself rest and “pacing”

At the end of February, after another night that had been as sleepless as it had been full of symptoms, I was taken to my GP as an emergency case. My condition, worsened by dehydration due to heavy sweating, could only be improved through an infusion. At that point, I decided that from now on I would practise the best pacing of all time. “Pacing” here refers to an adaptive form of energy management in which patients pay extremely close attention to the signals from their bodies in order not to push themselves beyond their limits. According to many specialists, it is one of the most important approaches for managing Long Covid symptoms and preventing longer-term deterioration. My maxim, I resolved with all my determination, would therefore be to take my severe exercise intolerance extremely seriously and avoid further crashes at all costs. I would give my body as much time to recover as it needed and resist every temptation to go beyond my limits on “good” days, however low those limits might be. I spent my days mainly lying down in a darkened room, listening to music and audiobooks – over time, screens and bright light also led to overstimulation – and doing a great deal of meditation with the mantra: I give myself rest.

I had already started meditating and receiving craniosacral therapy some time earlier because a family acquaintance had apparently recovered from Long Covid mainly through these methods. The Trimipramine prescribed by my GP also began to normalise my sleep somewhat. In addition, I monitored my heart rate minute by minute with my new smartwatch and tried to work out which activities were placing strain on my body. I began avoiding stairs and made sure that I moved only very slowly. My world became smaller and smaller, but if that was what was necessary to become healthy again, I was more than willing to do absolutely everything for it. All of this was possible only because of the enormous support of my partner and my retired parents, who cooked for me, cared for me and did pretty much everything on my behalf.

But apparently even the proclaimed best pacing in the world was not enough. The ups and downs, the fatigue, the crashes, the many symptoms – none of them could be stopped. Eventually, even showering while standing became too much, and an emotional conversation could trigger the typical delayed collapse of my system. Panic attacks gradually began creeping into my long days of lying down and meditating. My body felt unbelievably fragile. I could no longer trust it. The confidence in a relatively quick recovery that had kept me going began to crumble more and more. My partner, my parents and my sister – the only real people close to me at the time in my very narrow world – also began to despair under the immense burden and uncertainty. Things could not continue like this.

Long Covid rehabilitation clinic

Together with my family, I therefore decided to accept a room that had unexpectedly become available at a rehabilitation clinic specialising in Long Covid. This was despite my GP recommending that I wait another few weeks until I was hopefully somewhat fitter for the rehabilitation programme. To this day, I have still not entirely processed the absurdity of potentially being too sick to be admitted to a clinic and therefore having to wait at home, at the expense of my family, until I became healthier. After the difficult journey, however, arriving at the clinic immediately gave me hope. I felt understood by the medical staff, who had already treated hundreds of patients with similar exercise intolerance and recurring fatigue. I was able to talk with other people affected by Long Covid and no longer felt quite so alone in my suffering. With the help of a wheelchair, the lifts and very kind support, I was fairly mobile within the clinic. And the view of the nearby mountains – my place of the heart – was phenomenal and gave me comfort.

At the same time, a certain resignation began to spread within me. Many of the Long Covid patients at the clinic had already been suffering from the illness for several years without any lasting improvement in their condition. As one of the more severe cases at the clinic, I therefore had to considerably extend the time horizon I imagined for my illness, as the doctors also told me. The updated diagnosis I received at the clinic was: “Long Covid in the sense of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).” A complete recovery from this illness, I was told, was possible only in very rare cases. The primary aim in a first phase should therefore be learning how to manage life with such an impaired body and state of health. Despite the support of the clinic psychologist in trying to see this illness as a longer-term project – with difficult phases, but also great potential for learning about life, somewhat like my PhD – this was an extremely difficult perspective to accept.

On top of all this, my condition did not stabilise in the clinic either. Despite enormous motivation on my part, I apparently did not really fit into the clinic’s activation programme. Very soon, a “mobility training” session involving walking attempts with the help of a rollator – partly because of the inexperience of a new physiotherapist who encouraged me too vehemently – triggered another crash, plunging me for another day and night into an almost unbearable bath of pain and sensations. At times, these phases of severe symptoms felt like torture. The worst part was that there was almost no way of knowing how long they would last, combined with the enormous fear that any additional exertion might make the pain even worse. In this condition, participating in the rehabilitation programme was of course impossible. This led to serious concerns being raised already during my first interim meeting with the senior doctor about whether I could remain at the clinic, as I was very probably simply too weak for the rehabilitation programme. Ending my stay at the clinic would probably be necessary, I was told, in order to prevent an even greater deterioration through overexertion. But this would have meant returning home, where my family – who had only just had a week to recover from the enormous strains of the previous months – would once again have had to care for me in a less-than-ideal environment. A new stay at an alternative clinic with a rehabilitation approach less focused on movement would only have been possible after weeks or even months because of the long waiting lists. The enormous uncertainty surrounding my situation had now gained yet another dimension, placing an additional burden on me. There were moments when I seriously thought that I would not want to continue living like this for much longer.

A change in thinking

In the swamp of negative reports about Long Covid, my partner came across an article in The Guardian by Prof. Paul Garner, an epidemiologist and professor of infectious disease research, entitled: “If you have long Covid, as I did, don’t give up hope. Recovery is possible.” In it, Paul Garner shares his story of complete recovery following a Long Covid diagnosis, based on a new understanding of the cause of the illness as well as the experiences of people who recovered from ME/CFS. What Paul Garner describes is the realisation that the symptoms attributed to Long Covid are most likely neuroplastic in nature and are not caused by structural failure within the body. This means that the cause of the symptoms and recurring PEM crashes lies in the development of pathological neural networks that falsely activate the body’s alarm bells without there being severe organic damage. The undeniable long-term chronification and disabling nature of Long Covid is explained in this model by a fundamental learning process in the brain, through which certain neural circuits can become activated increasingly quickly and certain responses of the autonomic nervous system become more firmly established over time. This approach to explaining chronic symptoms is by no means new or specific to Long Covid, but applies to many kinds of chronic illnesses. In particular, this new knowledge is increasingly being applied very successfully in chronic pain. The fundamental difference compared with a hypothesis of structural failure within the body is that such a chronification of the illness can be reversed because of neuroplasticity. But could that really be true? Was there really a small light of hope in the dark cave of my clinic room? At the time my partner came across this article, I myself was unable to read more than two sentences at a time, and even longer voice messages very quickly triggered the first signs of unpleasant symptoms. I therefore had no direct access to this knowledge.

But I was extremely interested in the content of the article, and a small spark of hope was ignited in me. Thanks to my partner and my sister, who took the time to summarise the article and other sources and read the most important passages aloud to me, I gradually gained access to this completely new perspective on Long Covid, which immediately resonated with me. Firstly, there were so many striking similarities between my illness history and Paul Garner’s. And secondly, my Long Covid diagnosis had been based precisely on the finding that no structural damage could be found in my body. Avoiding symptoms had, on balance, not achieved very much for me over the preceding months, and I was more than ready to try something new.

But how could I be sure that the worst pain and discomfort I had ever experienced really were not signs of more serious damage within my body that could become worse through too much exertion? Unfortunately, there are still very few specialists who diagnose “chronic neuroplastic symptoms”. Knowledge about neuroplastic illnesses in general is still in its infancy, and the corresponding research findings and practical experience have not yet become established within standard medical education.

It is, however, possible even without the help of a specialist to investigate a potential neuroplastic origin of symptoms, particularly using this list of typical characteristics. Some of them applied to me:

• Stress: The symptoms first appeared during the stressful final phase of my PhD.
• Perfectionism: My perfectionistic personality trait apparently predisposes me to developing neuroplastic conditions.
• A wide range of different symptoms: The sheer number of very different symptoms that gradually appeared is a clear indication that a single physical failure somewhere in the body is a relatively unlikely cause.
• Moving and changing symptoms: Another particularly clear feature pointing towards the neuroplastic nature of symptoms is the inconsistency of the pain and sensations. In other words, neuroplastic symptoms can in many cases behave suspiciously. It is very typical for symptoms always to appear or disappear at a certain time of day or in particular situations, or for symptoms to “move around” the body, spread and change in mysterious ways. When I started paying attention to this, I realised that certain symptoms, such as the hammering in my head, were indeed very variable and could switch from the left side to the right. The pressure in my chest was not always the same either, and the fluttering in my muscles could spread throughout my whole body.

There were many signs, but I was still not 100% convinced, particularly with the fragmented knowledge I had at the time. I needed more concrete proof. If the hypothesis was correct that my illness was based on pathological neural circuits, then my primary goal did not necessarily have to be avoiding the symptoms at all. It would mean that repeated “overexertion” was not causing long-term damage to my body. So instead of responding with bed rest, I could sometimes react to symptoms with gentle but conscious activation, without guilt and without fear of serious consequences. According to specialists in neuroplastic illnesses, consciously changing one’s response to symptoms in this way can reveal quite clearly that the symptoms behave very differently from symptoms that have a physical cause.

But taking this new path in practice for the first time required a huge amount of courage. The narrative of caution and rest as the most important way of reducing symptoms was still deeply ingrained in me. One day, I was once again lying in bed with severe fatigue, with my body seeming to advise me at full volume, through an extreme heaviness everywhere, to remain in bed. I gathered all my courage and, despite this, got up to continue with what I had planned for that afternoon: I took a shower anyway. In doing so, I consciously went against the explicit recommendations of the doctor at the clinic. It felt like jumping into the unknown with a very uncertain outcome. Either Paul Garner was right, or I was recklessly causing further damage to my body. I still remember how incredibly good that shower felt. I consciously enjoyed the warm water on my skin and looked forward to the refreshing feeling afterwards. But what pleased me most in that moment was the freedom of defying the rules of the illness – an act of physical disobedience without thinking about the possible consequences. And the unexpected actually happened: completely unlike before, the symptoms did not become worse afterwards. On the contrary, after the shower the intense heaviness in my muscles even subsided. The correlation I had believed to be certain between physical exertion and a worsening of symptoms had been broken – both theoretically and practically. It was the starting signal for a process that would fundamentally change my life for the second time that year.

Through repeated positive experiences, I was gradually able to lose my fear of the symptoms and regain a certain sense of agency. The symptoms no longer completely determined the course of my day, and over time I regained a degree of trust in my body. During this initial phase, however, I was still unsure whether the new theory about the origin of the illness applied to all my symptoms. In particular, I thought that the fluttering and tingling muscle pain, which reliably appeared in the corresponding muscle groups after exertion, surely had to have a physical origin. Until I experienced another key moment. During one of the recurring sleepless nights in which I was worrying about the potentially overwhelming sports programme at the clinic the following day, exactly the same muscle symptoms suddenly appeared that would normally occur after physical exertion. With the knowledge I now had, it became clear to me that these symptoms too originated in neurological conditioning, rather than in the physical activity itself. As Paul Garner also describes, it is very typical for neuroplastic symptoms to be triggered through a process of conditioning – a phenomenon famously associated with Pavlov – by very specific triggers, in this case physical exertion, without there necessarily being a physical connection between the trigger and the symptoms. That meant my illness was indeed entirely due to a misprogramming of my brain, and I could become healthy again!

At this point, however, it is extremely important to me to emphasise that this absolutely does not mean that people with Long Covid should simply lose their fear of symptoms and the consequences of overexertion and return to activity. Chronic neuroplastic symptoms are a very serious illness that can cause unimaginable suffering through pain and symptoms that are as real as pain and symptoms can possibly be, regardless of whether or not they indicate structural damage. Once the neural circuits producing pain and symptoms have been learned and firmly established, they do not simply disappear overnight. Even if symptoms appear inconsistently and can to some extent be influenced by conscious actions, it is simply a fact that neurons within learned and established neural pathways will continue firing their signals repeatedly for a certain period of time, regardless of how one reacts to the symptoms. Even with my new knowledge and the conviction that my physical body was healthy, my nervous system repeatedly responded with symptoms and severe collapses. The trust that my body itself was intact was very helpful in enduring the suffering, and the extreme overreaction to certain triggers improved quite quickly. Nevertheless, I was still unable to brush my teeth standing up for two minutes, let alone walk longer distances. You are still seriously ill and impaired when diagnosed with a neuroplastic illness.

The good news, however, is that the plasticity of the brain equally means that harmful circuits can be unlearned again, no matter how deeply ingrained they have become – in other words, no matter how long someone has already been ill. While the triggering and persistence of symptoms and pain are based on autonomous processes within the brain, we humans can nevertheless influence the longer- term development of new neurological pathways, as well as the unlearning of unwanted synaptic connections, through conscious action. It has been shown that conscious attitudes and activities can have a lasting influence on our brain activity. And just as we can learn new abilities throughout our lives, we can also unlearn old patterns. With some time, exercises and behavioural changes can therefore completely overwrite even deeply ingrained pain and symptom pathways.

My path to recovery: Unlearning with trust, joy and calm

Just as chronic neuroplastic pain and illness appear and manifest themselves differently from one person to another, the paths towards recovery are equally diverse. Many roads lead to the destination, and there is no doubt that the effectiveness of different exercises can vary greatly from person to person. Over recent years, however, therapy paradigms tested in practice have been developed that, in the case of neuroplastic illnesses, can specifically and efficiently help reprogramme unwanted chronic bodily responses. For me, it was so-called Pain Reprocessing Therapy, or PRT, which, from the point when I changed my understanding of the cause of my illness, brought me from a wheelchair back to the summit of a mountain in just over two months. There are an increasing number of trained coaches who explicitly offer PRT. A directory of PRT-trained practitioners is available here . Personally, however, I never made use of these services, because the information underlying this therapy is accessible even without professional guidance, starting with Alan Gordon’s book The Way Out, written by one of the founders of PRT, and the free educational resources from the Pain Reprocessing Therapy Center . Also particularly worth mentioning are the Curable app and its German-language counterpart HELP, which present information about neuroplastic illnesses and pain, as well as different pain-reprocessing tools, in small pieces. This meant that even when I could barely read and could only listen to audio recordings for limited periods, I was able to access this new, life-changing knowledge. I would now like to explain what PRT looked like concretely for me.

Step one: Knowledge is agency – trust in my body returns

Without doubt, the necessary foundation for becoming healthy again in my case was the change in thinking described above regarding the cause of the illness. This went hand in hand with developing the trust that my body was actually healthy and that I could therefore return to my former life.

Two central convictions were particularly important:

1. “Overexertion” and the associated worsening of symptoms do not in any way lead to longer-term, irreversible physical damage. I do not think I could have successfully begun symptom reprocessing therapy without this certainty.
2. A complete and relatively rapid recovery is not only within the realm of possibility, but even likely.

To strengthen and maintain my trust in these two fundamental principles over the longer term, a deeper understanding of neuroplastic illnesses and the associated neurological knowledge was enormously important to me – but so were the recovery stories of other people. Fortunately, like Paul Garner, many people share on different platforms how they were able to recover from sometimes very severe Long Covid or ME/CFS through the targeted neuroplastic reprogramming of faulty nervous-system responses. Long Covid and/or ME/CFS-specific recovery accounts can be found, for example, here: Longcovidcured; Recoverynorway; Positivelycovid; YouTube – Rebecca Tolin. During moments of severe symptoms, rather than retreating into bed, I often sat somewhere pleasant and read these stories, which frequently led to a reduction in the acute pain. Far more important, however, was the longer-term confidence and support these recovery stories gave me.

Because it is important to understand that recovery from neuroplastic symptoms is rarely linear. On the contrary, temporary setbacks are the norm, which can make it difficult to maintain over the long term the certainty that one’s body is intact and the conviction that one is on the right path. But the many recovery stories repeatedly gave me courage and the necessary ongoing trust in the process of reprogramming. This podcast by Alan Gordon and Alon Ziv, featuring concrete therapy examples with chronic pain patients, also gave me a great deal of confidence and trust. Among other things, it introduced me to the phenomenon of the “Extinction Burst”: before a trained automatic process in the brain disappears, there are often final, intensified bursts. A sudden worsening of existing symptoms, or even the appearance of new symptoms, can therefore also be a sign that you are on the right path. On the basis of this trust, I could then begin the process of reprocessing the triggers and symptoms through two further steps:

Step two: Through conscious action, actively create alternative neurological pathways. Step three: Apply general strategies to calm the system’s state of alarm. I describe these two steps below.

Step two: A new way of dealing with my symptoms and triggers – joy returns

The most important part of my therapy consisted of actually reprocessing the symptoms of the illness by actively promoting the creation of new synaptic connections and the unlearning of unwanted ones. I was able to do this through a conscious change in the way I dealt with the symptoms, their triggers, and the general situation I found myself in.

I. Reprocessing symptoms

One of the most important tools for me was Somatic Tracking, a curious and fear-free process of feeling and observing sensations that had previously been interpreted as terrible symptoms. Based on the trust that the signals from my body did not indicate severe irreversible damage, I was able to encounter the symptoms in a completely new way and sustainably reinterpret what they meant. For example, the unpleasant fluttering and general restlessness that I often felt in my body suddenly began to feel more like the pleasant bubbling of a whirlpool, which I could even enjoy. Not all symptoms – particularly painful ones – allowed for such a positive reinterpretation. But gradually, I managed to lose my fear of the symptoms. That did not mean that the symptoms stopped appearing. But it allowed me, over time, to respond to them in a completely different way. Instead of retreating back into bed and suffering while waiting for the symptoms to subside, I no longer allowed them to stop me from bringing joy into my life.

II. A new way of dealing with the situation I was in

At the beginning, when I was still barely mobile and my intolerance to stimuli remained very high, I often spent the long hours lying down visualising beautiful events from my past or fantasising about the future and everything I would do once I was healthy again. Through small mindfulness exercises – consciously enjoying the sun, food, warm water or pleasant encounters at the clinic – I also brought small moments of joy back into my restricted life.

The little euphoria triggered by discovering the neuroplastic approach, and the accompanying hope that I might have found a way out, meant that at least my intolerance to stimuli improved relatively quickly. And I celebrated every piece of freedom I regained. I started thinking about what I enjoyed doing and what brought me joy. Whatever I could do again, I enjoyed to the fullest. Learning new knowledge and new skills in particular felt as though it had a very positive effect on me.

For example, I learned to recognise the bird songs and constellations that found their way into my clinic room, or tried new tricks with skill games that lay within my safe zone of physical exertion. I practised juggling and Kendama, or tried balancing on a Pilates roller, where for a moment I could feel almost as though I were surfing. I am convinced that learning these new skills actively supported the reprogramming of my nervous system.

Over time, I was also able once again to enjoy visits from people close to me and physical closeness without fearing the unpleasant consequences of overstimulation. In this way too, I could actively bring joy back into my life. But, as I have said, this upward trend was by no means linear. Certain triggers – above all minimal physical exertion and, most particularly, walking more than a few dozen metres – remained very persistent and reliably continued to cause severe symptoms.

III. A new way of dealing with triggers

What helped me enormously here was, in a sense, to trick these triggers by performing the activities differently or in a different setting. Specifically, rather than simply trying to increase my walking distance – which repeatedly resulted in a crash – I instead danced for increasingly long periods to good music in the safety of my room. I also showered to the rhythm of music or incorporated initial strength and endurance exercises into the skill games mentioned above, as well as into gentle yoga.

In general, I made sure not to approach my triggers with a cautious and fearful attitude, but consciously with a casual attitude that treated them as fundamentally unimportant. In other words, I stopped performing movements particularly slowly in order to save energy and instead moved as normally as possible – sometimes even adding an extra portion of joyful arm swinging or confidently lifting my head. And, not least, I tried climbing the frightening stairs at an ordinary pace.

In this way, I increasingly collected positive experiences. I became more confident that there was no physical connection between the triggers and the symptoms and that I would not necessarily have to “pay for” an “overexertion” afterwards. Over time, these experiences reduced my fear and stress surrounding the symptoms, which in turn increasingly allowed me to carry out activities without symptoms. A positive cycle as the counterpart to the stress-fear-symptom spiral that had pulled me so deeply down into physical disability.

A deeper engagement with my emotions also helped me. I had always tended largely to suppress emotions rather than allow them, and I viewed classically “negative” emotions such as anger, fear and grief, and the accompanying loss of control, as undesirable. Through psychological conversations, exercises and journalling, I was gradually able to develop a healthier attitude in this respect. This can certainly also be seen as a newly learned way of dealing with one type of trigger for certain neuroplastic symptoms.

These three strategies helped me reprogramme my pathological synaptic connections. It is important to me to point out that these three categories directly contradicted the officially promoted therapeutic strategies – including those taught at the clinic. Rather than symptom-focused pacing, with close monitoring of symptoms in order to prevent their appearance at all costs, what helped me was instead an active reinterpretation of the symptoms (I) so that they lost their threatening nature. This allowed me to move away from continuous symptom monitoring and towards a genuine focus on general sources of joy in life (II). The primary aim was therefore no longer to avoid symptoms, but to change how I dealt with them and with the situation I found myself in. Likewise, I moved away from the recommended energy-management strategies and consciously stopped trying to achieve an “optimal” distribution of energy throughout the day or performing especially energy-saving movements. I rejected the idea that my “energy tank” should suddenly be empty after only minimal exertion. On the contrary, I carried out more and more activities in a natural way and without an overarching plan (III). I knew that my body was healthy, and step by step I could communicate this to my autonomic nervous system through signals that were as normal as possible.

Step three: Reducing everyday stress – calm returns

It was central to my recovery that my body was able to switch off its general emergency mode. To achieve this, I reduced the level of stress in my everyday life by creating a safe and stable environment to reduce pressure and fears about the future, and by learning various calming techniques. For me, these ranged from different forms of meditation – such as autogenic training, breathing meditation and progressive muscle relaxation – to visiting an “inner safe place”, an exercise the clinic psychologist had given me.

A healthy dose of “self-care” also belongs here. By this, I mean less going on wellness trips and more not judging oneself too harshly, accepting and understanding one’s own weaknesses and fears. Alan Gordon, as mentioned one of the founders of PRT, describes this very accessibly as treating the symptom-producing subconscious, as well as the uncontrollable thoughts of self-doubt, inadequacy and helplessness, with the same care one would give to a helpless child. In my experience, however, the most important thing in this respect was developing an honest fundamental attitude of calmness.

As Alan Gordon also emphasises, active reprogramming cannot be forced. A grim, tense attitude while pursuing reprocessing strategies instead fuels the stress-related origin of the symptoms, potentially causing exactly the opposite effect. I experienced this myself in relation to walking. Once I had made my first improvements, I desperately wanted to become mobile again as quickly as possible. My overriding goal was to free myself from the immense restriction of being unable to walk around freely. And, as with so many things in life, I approached this goal with a great deal of determination and willpower. But I had to realise that this strategy, which had previously led me to many successes in life, once again absolutely did not work in the context of this illness. Instead of continuing to swim on the hoped-for wave of success, I sank again into the depths of symptoms, no matter how hard and determinedly I fought against them. The bold attempt to walk all the way to the clinic dining room once again ended in a sleepless night full of pain and symptoms, and further forced attempts to increase my walking distance also had unpleasant consequences.

Only when I decided to allow myself a break for several days and managed to let go of the pressure for rapid improvement did the setbacks subside. When I then returned to movement in the playful way described above – among other things through dancing – and was able to cultivate an attitude of lightness towards further progress, I gradually managed over the course of several weeks to loosen the knot of tension. In this sense, I am convinced that it matters less which calming techniques one uses or what exactly reducing stress in daily life looks like. What matters is that they contribute to an underlying mood of calmness that favours the dissolution of unwanted nervous-system responses.

As soon as the parasympathetic nervous system – the rest-and-recovery state of the autonomic nervous system – increasingly takes over again, the body no longer reacts so extremely to external triggers and new, symptom-free neural pathways can be created. For me, however, this was a huge challenge. The fact that success in recovery does not really depend simply on pure effort and the determination behind it, but instead should be initiated as naturally as possible and preferably without great effort, was one of the most difficult things for me on my path back to life.

My wildest dreams come true

But in the end, I found my way. The new understanding of chronic pain and the associated method of pain reprocessing worked for me. Looking back, it actually worked quite effectively. During the final week of my two-month stay at the clinic, I achieved a small breakthrough: I was once again able to brush my teeth standing up for two minutes, and I could also climb a few stairs. After that, I could almost physically feel a switch being released, and things began improving in huge steps – quite literally uphill. One month later, in the middle of June, I was already climbing my first mountain again: the Ochsen in the Fribourg Pre-Alps. In September 2024, I started my current 100% position as a postdoctoral researcher at the University of Bern and the Niels Bohr Institute in Copenhagen, and since then I have considered myself completely recovered, without any remaining limitations. Compared with the medical prognosis of an illness lasting several years with an uncertain chance of recovery, this course corresponds to the wildest dreams I had when I entered the clinic in Gais.

But I definitely did not primarily recover through the clinic’s therapies and its narrative of the illness. Rather, I had to distance myself from the claim that chronic fatigue could only “rarely be cured” and actively turn away from the symptom-monitoring pacing that was promoted, as well as parts of the energy-management training. I certainly benefited from the guided movement activation and relaxation exercises, the psychological support, the surrounding nature and also the care of the clinic staff. But this was only beneficial in the longer term because I fortunately came across a fundamentally new understanding of the illness. Before discovering the neuroplastic symptom approach, neither classical psychotherapy, craniosacral therapy, movement therapies, a comprehensive reduction in stress and physical exertion, nor weeks of meditation had really helped me. What ultimately helped me recover was solely a fundamental change in my understanding of the origin of the symptoms, together with the conscious actions specifically aimed at unlearning neuroplastic symptoms. Knowing that the symptoms were neuroplastic in nature and that my body was not irreversibly damaged was the decisive difference that enabled the therapies to have a lasting effect.

What I take away

Long Covid changed my life – ultimately in a positive way. This experience was without doubt the most difficult, painful and frightening I have ever been through. I reached the limits of my existence and had to endure many moments of pure despair and complete lack of perspective. But it is not the illness itself that will shape my life forever. It is the path out of it. I was able to completely rethink a central aspect of how the human body functions – namely, the interaction between external signals and lived reality – and discover a completely new degree of agency over my lived experience.

I realised that I had actually been suffering from chronic neuroplastic pain for much longer, but that I am no longer helplessly exposed to it. For example, I was able to get rid of the chronic neck pain I had been carrying with me since my Master’s degree, for which countless physiotherapists and osteopaths had been unable to find a recipe for lasting relief over many years. I am also well on my way to completely unlearning the symptoms of my diagnosis of “Restless Legs Syndrome”. In large parts of the medical profession, Restless Legs Syndrome is still considered a neurological illness with potentially “enormous physical and psychological burden” which, as I was also told, generally becomes worse with increasing age. But this supposedly “incurable” illness can, with a high degree of probability, also be attributed to neuroplastic symptoms. And I am still fascinated every time my headaches – which used to ruin an evening for me every now and then – can be influenced through conscious actions on my part and often simply disappear again.

The path of symptom reprocessing was by no means easy. It requires openness towards new, counterintuitive ideas, an intensive engagement with oneself and one’s deepest fears, perseverance, a great deal of willpower, time and effort. It would be so much easier simply to take an ME/CFS medication or hope for a Long Covid injection. But unfortunately, such a miracle cure will most probably not exist in the near future. I am aware that I occupied a very privileged position during my illness. I do not have children who depend on me, I do not suffer from other illnesses or disabilities, and I have sufficient language skills to understand the information about neuroplastic illnesses and PRT, which is currently mainly available in English.

Above all, I was able to rely on an incredible environment of family, friends and acquaintances who caught me, carried me and suffered alongside me.I would like to express my heartfelt thanks here to all of these people, including the many professional medical caregivers who looked after me. My parents in particular had the time to care for me for weeks, drive me around by car and take me on outings. They organised and took care of all kinds of things for me and were also able to support me financially. And without the enormous support of my life partner – who cared for me lovingly, managed my life, took over the household 100%, repeatedly lifted me up, found the neuroplastic approach and brought it to me, and gave me the most important reason to keep fighting – I simply would not have made it.

Nevertheless, I am convinced that every person, regardless of how severely and for how long they have already been suffering from the neuroplastic symptoms of Long Covid and ME/CFS, has the chance, with the necessary support, to unlearn this terrible and disabling illness, leave it behind and return to a life of freedom and joy. I hope that my story can make a small contribution towards giving others confidence and a new perspective, just as the recovery stories of other people did for me.