A medical treasure hunt

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  • In Context

    1174 www.thelancet.com/neurology Vol 13 December 2014

    In 1952, Lytico-Bodig, a rare neurological disease sharing features with amyotrophic lateral sclerosis, Parkinsons disease, and Alzheimers disease was dis covered on the remote island of Guam. The Pacifi c island was quickly hailed a gold mine of research exploration and a treasure island on which the secrets of neurodegenerative diseases could be unearthed. In The Illness and the Odyssey, Berry Minott documents the long and winding treasure hunt undertaken by internationally acclaimed scientists over the next 40 years to fi nd the buried goldthe cause of this mysterious disease.

    Like Robert Louis Stevensons Treasure Island, the fi lm off ers a story fi lled with atmosphere, characters, and action. Where Treasure Island has Jim Hawkins, The Illness and the Odyssey has Oliver Sacks, who sets the scene by likening Lytico-Bodig to a rosetta stone, a potential key to understanding these three neurodegenerative diseases. Sacks book The Island of the Colorblind was in fact part of Minotts inspiration for the fi lm; she read it because of her curiosity about dementia, which runs in her family. My grandmother died of what was likely frontotemporal dementia. My cousin is dying from primary progressive aphasia. They lived on the same street in Portland, Oregon, and although there might be a gene involved in dementia, it is not inherited. I reasoned that there must be an environmental factor that caused their disease, and she was inspired to fi nd out what it was, she explains to The Lancet Neurology. My own odyssey with Lytico-Bodig began when I wrote to Dr John Steele, who has lived on Guam and studied the disease for decades. As I came to understand the disease and the search for its cause, I realised a part of the story of Lytico-Bodig was the tale of the scientists determined to fi nd the culprit. And so began Minotts quest, with interviews, documentary scenes, and rare archival footage, to trace the story of the scientists who hoped to reveal the mystery of this rare disease.

    The hunt to fi nd the cause of Lytico-Bodiga disease of progressive paralysis that takes its name from the Spanish word for lack of mobility paralticobegan during World War 2 after US forces took back Guam from the Japanese and navy doctors surveying the island discovered a devastating affl iction in the native Chamorro population. In the fi lm, the Treasure Island Squire Trelawneys (ie, the characters holding the purse strings) are the National Institutes of Health and the military, who realised the importance of this disease in the 1950s, and established a research centre to search for its cause. Huge government funds were released and the scientifi c community took notewhoever cracked the code of this disease would probably win the Nobel Prize and become an international hero for unearthing this buried treasure.

    The fi lm is split into the main hypotheses that arose over the coming years. One of the fi rst researchers to travel to

    the X on the treasure map was Leonard Kurland, who set off to Guam from America in 1953 with his hypothesis that Lytico-Bodig was a genetic disease. Indeed, the disease occurred in families and had passed from generation to generation from as far back as the 1700s. This hypothesis was dismissed quickly (several immigrants who had the same lifestyle as locals also developed Lytico-Bodig). No association was found between environment, diet, or an infectious agent, and after almost 40 years of research, nobody had been able to pull the sword from the stone. The hypotheses continued to fl ow: the disease was caused by a parasite, claimed John Steele; the disease was caused by eating bats, argued Paul Cox; both were quickly rejected. This was a frustrating time, not least for scientists, but for the people of Guam, who had been studied for generations with apparently nothing to show for it. By the late 1980s, a remarkable change was happening in Guam: the number of cases of Lytico-Bodig disease was decreasing, and hardly anybody born after the 1950s was getting the disease. This development was a ray of hope for the people of Guam, but a threat to the scientists studying this possible skeleton key for diseases like Alzheimers disease.

    But why so much urgency and frustration? Up to 10 million people worldwide have Parkinsons disease, and the World Alzheimer Report 2010 estimated that ageing of the global population will make the economic eff ect of dementia greater than that of cancer, heart disease, and stroke combined. Understanding the causes of neurodegenerative diseases is one of the biggest challenges of the 21st century and The Illness and the Odyssey successfully showcases the strong feelings that have arisen as a consequence of these high stakes. Jonathan Weiner, Pulitzer Prize-winning science writer, claimed it was almost as diffi cult to write about Lytico-Bodig without stirring peoples anger as it was writing about Israel and Palestine. As Bruce Miller, Director of the UCSF Memory and Aging Centre (CA, USA), points out in the fi lm: This is the problem for our generation to solve in the way that people in the 1950s solved polio; in the next 10 years we need to do something to make a dent in these diseases.

    This fascinating fi lm ends with the gold still buried deeply underground and the resignation that LyticoBodig might just go down as one of those unsolved medical mysteries. As Minott off ers: Scientifi c research is not as linear as I previously believed before I made the fi lm, there are many twists and turns before the truth comes out. Until the mystery of Lytico-Bodig is solved, the twists, turns, and hunting continues.

    Natalie Harrison

    FilmA medical treasure hunt

    Published OnlineJune 27, 2014


    The Illness and the Odyssey Directed by Berry Minnott, 2013,

    USA, 70 min

    For more on Lytico-Bodig see In Context Lancet Neurol 2013;

    12: 104344

    For the World Alzheimer Report 2010 see http://www.alz.co.uk/research/fi les/WorldAlzheimer-