Aims Chronic Fatigue Syndrome (CFS) impacts negatively the quality of life, school attendance and social and family functioning. Cognitive dysfunction represents one of the most common and disabling symptoms. We report a severe case of CFS with extreme cognition loss.
Results A previously healthy and athletic male adolescent developed weakness and fatigue following a viral illness at 10 years old. Mobility progressively deteriorated over two years, requiring wheelchair and admission. Investigations, including brain and spinal MRI, were unremarkable and CFS diagnosed. He started intensive physiotherapy but, while his physical activity improved, an abrupt extreme cognitive loss took place. He reported ‘brain fog’ and formal testing showed incredibly slow cognitive and sensory processing (e.g. score of 4/10 in processing incoming language). After little improvement, he restarted deteriorating and stopped attending school.
Aged 16, he was referred to our specialist CFS team, lying mainly in bed and unable to feed himself. He had diminished ability to speak and slow comprehensive processing. He struggled with significant anxiety, low mood, poor sleep and socially isolation. Further investigation, with EEG and neurological reassessment, was normal. He initiated a regular multi-disciplinary rehabilitation program, including patient and family support, pacing, graded exercise, sleep hygiene and pain relief. He indicated that he chose to use his energy on physical improvement at the expense of communication, hence, while his mobility slowly improved over one year, his cognitive ability notably deteriorated. He became gradually more non-verbal and uncommunicative, initially using signboards, but then refusing. Once his physical activity had markedly improved from being bedbound to walking, he restarted communicating by smiling and using thumbs up/down, slow speech with lags between words, then rapidly increasing to full sentences. After two years of therapy his improvement has been remarkable. Currently he walks, sleeps regularly, speaks fluently and engages with family and friends. He has home- tuition and has future goals.
Conclusion Establishing the accurate diagnosis and early symptom management are crucial for rehabilitation in CFS. Cognitive impairment may be significantly debilitating. Physical and cognitive recovery occurs at different stages. A multi-disciplinary patient-centred approach, working with families and local services, can be very effective.
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