‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions

Maeve Boothby O'Neill's parents tell of desperate efforts to find help and their desire to improve treatment for others

In January 2021, Maeve Boothby O'Neill took stock and summed up her position. I've been tired since I was 13," she wrote. When I was 18, I was diagnosed with ME/CFS. I hoped I would finally get treatment and recover my health. I had every potential to be an asset to humanity and hoped and intended to advance the cause of human flourishing."

Maeve, a bright, diligent, determined young woman, and her loved ones did their best over the years to get help but the treatment - and the fundamental understanding of myalgic encephalomyelitis/chronic fatigue syndrome - just was not available.