Born in Sri Lanka, Anil Van der Zee grew up in the north of the Netherlands. He studied at the Royal Conservatory of The Hague, before shining as a professional dancer. But in 2007, a viral infection abruptly ended his career.
What is myalgic encephalomyelitis that touches the artist?
Since then, his illness, myalgic encephalomyelitis, also called chronic fatigue syndrome (SFC), has nailed it to bed.
Unable to maintain physical activity without risking severe deterioration, he describes his daily life “in an combined room, with earplugs and site helmets“, Any physical or mental overload that can cause a relapse.
Having become a photographer, videographer and activist, he now uses his art and voice to raise awareness of myalgic encephalomyelitis, on the occasion of the disease awareness day on August 8.
A disabling disease difficult to diagnose
The SFC results in a deep exhaustion and deep tiredness (inability to perform daily tasks, even to stand). This is accompanied by physical (muscle and joint pain and articular disorders close to fibromyalgia) and cognitive (memory disorders, concentration …),. It mainly affects women between 40 and 50 years old. Its causes remain vague: anomalies of the immune system, infections such as mononucleosis or long covid, genetic or environmental factors …
The diagnosis is complex and often long. “”Many diseases can cause chronic fatigue. As there is no marker, it is therefore a question of proceeding by elimination“explained Dr. Pascal Douek, general practitioner, in an article on the subject.
Many patients come up against medical misunderstanding. Some still hear that “it is in their heads”, which aggravates their distress. Symptoms include persistent fatigue for more than six months, non -restful sleep, muscle and joint pain, digestive and cognitive disorders, as well as major intolerance to effort.
“”Fibromyalgic often sleeps badly. The tired chronic can sleep well even if he wakes up tired“, Analysis Dr. Grégoire Cozon, immunologist at Edouard Herriot Hospital in Lyon. He also specifies that”The disease affects often very active people overnight, find themselves almost unable to advance“.
Living with chronic fatigue syndrome
The evolution of the disease is unpredictable. Some people recover after a few years, others remain heavily disabled for life. Professor Jean-Dominique de Korwin underlines that“It is a chronic disease characterized by an inflammatory state which seems to evolve by pushes”.
In the absence of curative treatment, people with affected must learn to spare their energy to avoid post-effect discomfort. Care targeting pain or mood disorders can relieve everyday life.
The impact on professional and personal life is major, often requiring the development of the rhythm and the environment. A resumption of very progressive physical activity, supervised by a physiotherapist, can be envisaged, as is a cognitive behavioral therapy to reduce the fear of relapses.
Nutritional tracks, such as probiotics or vitamins, are being studied to rebalance the intestinal flora. Adapted lifestyle, sleep management, psychological support, relaxation, rest and quality sleep remain essential.