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A Top Scientist Races To Cure ME/CFS - And Save His Son

Whitney Dafoe often needs to communicate using body language or by attempting to act out what he is trying to say. At times he might manage to type short messages into a tablet - or line up Scrabble pieces to make words.

Whitney, aged 37, lives in a darkened room at his parents' California home. A former freelance photographer who travelled widely when he was younger, he’s been seriously ill for more than a decade. For the past 6 years he has been entirely bedridden and tube-fed; unable to walk, eat or speak.

In the early years of his illness Whitney and his parents desperately sought help, moving from one specialist to another, and still no answers. Then, finally, a diagnosis: the poorly researched, often misunderstood and stigmatised disease (or perhaps cluster of diseases) known variously as Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or “ME/CFS”.

His father’s fight to solve one of medicine’s biggest mysteries is told in a new book, The Puzzle Solver.

Ron Davis is no ordinary dad - he’s a very smart guy. Named one of the world’s greatest living inventors by The Atlantic, he’s a top Stanford geneticist who helped to crack the code of DNA. Now he’s changed his career to focus wholly on seeking a cure for ME/CFS.

We follow Ron as he studies his own son's donated blood and genome, and builds well-respected research teams, to begin to find answers.

Davis uncovers some of the biological processes going awry in this disease and this may open up possible paths to an eventual cure. Though a magic bullet hasn’t appeared yet, researchers are getting closer to possible answers.

While often moving and heart-wrenching, this gripping, readable tale also contains hope.

This is the story of one patient - and his dedicated parents. But it's also the story of more than 20 million ME/CFS patients globally, including an estimated 40,000-plus in New Zealand.

One-quarter are classed as having severe illness: housebound or bedridden. Even for those with mild or moderate illness, quality of life can greatly diminish. Many lose their jobs, their homes, even family and friends.

Many people mistakenly think ME/CFS is about feeling tired - but ‘chronic fatigue’ is a misnomer. This serious and debilitating disease affects many parts of the body, including the nervous system, immune system and cell function.

People with ME/CFS find they can’t tolerate exertion (sometimes even minor exertion like brushing teeth or showering) as it results in a worsening of symptoms. Their extreme exhaustion doesn’t abate with rest, and they typically suffer with diverse symptoms like pain, dizziness or fainting, insomnia and problems thinking and concentrating.

These patients remain neglected and underserved by both research and health services in New Zealand and overseas. It's still hard to find health professionals who are knowledgeable in the disease. And cruelly, those with the illness understandably don’t have spare energy to speak out.

M.E. Awareness NZ hopes this book will help to bring about the change in health care and research that so many patients and families urgently need.

M.E. Awareness NZ is a national collective of New Zealanders with ME and our carers and supporters:

The book is now available in New Zealand bookstores (Allen & Unwin, $37.99):

The book’s author, Tracie White, is an award-winning science writer for Stanford University’s School of Medicine:

© Scoop Media

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