A scientist’s journey of recovery from chronic symptoms following infection

This month’s guest blogger is Ilke de Lange, a scientist who recovered from debilitating post-viral fatigue, using a neuroplastic approach.

How it all began

Before I became unwell, I was studying psychobiology and achieving good grades. My life was filled with studying, travelling, caring for my horse, my part-time job, and social activities. I always had plenty of energy, just not enough time.

However, when I contracted the Epstein-Barr virus, my body suddenly forced me to stop. I experienced severe fatigue, headaches, rapid heartbeat, dizziness and brain fog. The hospital tests showed nothing, and I thought the symptoms would pass on their own.

How things progressed

I started a part-time Masters in Cognitive Neuroscience, waiting for the fatigue to ease. My ability to function fluctuated: sometimes I could manage my internship activities but would crash in the evenings; other times, I could not sit up for weeks. I struggled daily with muscle fatigue, heart palpitations, headaches and brain fog.

My initial response to symptoms

When the doctors could not find anything to explain the symptoms, I assumed the fatigue and related symptoms would resolve on their own. I did not seek any treatment, but did try to prevent symptoms by resting, taking painkillers and pacing myself – even though my condition worsened over time. Two years later, I tried some diet changes, but these did not help either.

A low that became a turning point

A new COVID infection pushed me to a new low. I was barely able to even sit up in bed for two months. I do not remember exactly how I felt as I have very little recollection of this period. However, I know that for me, the severity of the symptoms at this time was the final straw: I had to figure out how to recover.

As my symptoms were impossible to hide, I finally spoke up during my internship. There, I was recommended Jan Rothney’s book Breaking Free – a guide to recovering from chronic fatigue syndrome and long covid symptoms, which marked the start of my recovery journey.

Breaking Free shares Jan Rothney’s experience of recovering from chronic fatigue syndrome - and introduces her Reset to Thrive method. The book explains how to break patterns of fatigue, brain fog, and pain, using a neuroplastic / mind-body approach, offering a pathway to lasting recovery.

Despite studying neuroscience, I had never considered that my symptoms could stem from the mind-body connection - a dysregulated nervous system. The book explains that chronic fatigue can be maintained by dysregulation of the nervous system and prolonged biological stress responses; rather than by any physical damage. It made me realise that nothing was broken or damaged and that I could recover by regulating my nervous system – and that I had the power to do this.

Committing to the neuroplastic approach

I leant that recovery was possible, so I committed fully to the neuroplastic approach. My healing began with Jan Rothney’s Reset to Thrive programme, trauma therapy, learning to process emotions, somatic (body-based) exercises, haptotherapy*, and creating a safe environment for my nervous system by reminding myself of all the positive things in my life and surrounding myself by people that supported me.

For months, my days consisted of resting, learning, setting boundaries, trauma processing (both cognitive and somatic via trauma releasing exercises - TRE), and rewiring my associations with symptoms and movement (brain retraining).

I retrained my brain by learning to focus on the things I could do; reminding myself that symptoms were not dangerous and that avoidance was not helping me in the long run; and countering negative beliefs and thoughts related to movement, exertion and setbacks.

Recovery game-changers

During my recovery, the two biggest game changers were retraining my brain and blowing bubbles. Blowing bubbles helped me by calming my breath (and thus nervous system) and by taking the focus off my symptoms (and into the world around me).   

What life looks like today

Four years after my symptoms began, I am now fully recovered. I work full time in neuroscientific research, sing in a choir and enjoy social and family relationships. I can easily spend a day at Disneyland and the next day in Paris! Symptoms like fatigue, heart palpitations, brain fog, and headaches are gone.

I am me again.

Ilke reclaiming her life after severe chronic symptoms

Tips to share with others in recovery

My tips? Find ways to soothe and regulate your nervous system, for example by committing to mind-body practices. Remember that mindset is key. Be kind to yourself when things do not go as planned. Know that recovery is possible.

*Haptotherapy is a therapy that helps people get more in touch with themselves and their emotions through bodily awareness.