By Natalie Akoorie in M.E. Awareness NZ.
Marcel Robert lives in a rest home. He is 31 years old. Natalie Akoorie finds out what it’s like to be unable to live life because of an illness and why funding for research is so important.
In a darkened room at Oxford Court Lifecare in Dunedin, a man who should be in the prime of his life is wasting away.
Marcel Robert is bedbound, unable to care for himself, barely able to hold a conversation above a whisper.
He’s been living like this, solely reliant on caregivers to survive, for 18 months and there’s no hope of improvement anytime soon.
Robert has myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).
The debilitating condition, which affects at least 20,000 New Zealanders, causes extreme exhaustion, a post-exertional malaise – usually after a sufferer has used too much energy, sending them spiralling into a “crash” they sometimes cannot recover from.
It is typically triggered by a viral infection, such as the flu, that the body never recovers from.
In Robert’s case he was struck down with glandular fever as a 14-year-old.
The previously active, sport-loving teenager missed school for months and before he could fully recover he came down with the same symptoms again.
Slowly, eventually he recovered enough to attend university but by age 20 he began waking up feeling “completely drained”.
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