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Millions Are Missing: Will The World Finally Notice? - article by Maureen Hanson on Huffington Post


ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

Really great article.

Millions Are Missing: Will The World Finally Notice?
09/30/2016 08:42 am ET

Maureen Hanson
Researcher; Geneticist; Professor, Cornell University

Photo by Mary Calvert

This week, demonstrations occurred in 25 global cities world-wide to focus attention on a neglected, devastating disease — Myalgic Encephalomyelitis (ME), an illness that also goes by the misleading name Chronic Fatigue Syndrome (CFS). At this event, the most powerful demonstrators were those who could not attend — the bedridden and housebound patients.

The protest, named Millions Missing, has been organized by #MEAction, a patient/caregiver group. What millions are missing? Millions of people across the globe are missing the ability to lead normal lives, millions of dollars have been missing from what should be a government-funded research effort, and few of the more than 10 million doctors in the world have been properly educated as to the seriousness of the disease and how to diagnosis it.

Visual evidence of the impact of the disease were displays of thousands of shoes sent from patients too ill to attend. The symbolism reminds me of my school-age visit to a house-museum from Colonial Times in America, in which there was a heart-wrenching exhibit of children’s shoes in a bedroom. Because of the childhood diseases untreatable in the 1700s, the parents had lost a dozen children. The largest pair of shoes each wore at the time he or she died was shown next to an empty bed...