#10 Millions Missing: Scott Simpson on the uphill battle of myalgic encephalomyelitis patients

Activism Academy

Welcome to another episode of the Activism Academy.

Our guest today is Scott Simpson.

This episode is about myalgic encephalomyelitis, a chronic, multi-system condition characterized by post-exertional malaise, an exacerbation of symptoms following ordinary physical or cognitive activity with prolonged recovery that may result in a permanent decrease in functioning. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work. ME affects 15 to 30 million women, men and children around the world.

Scott Simpson is a Canadian patient living with HIV since 1998 but "suffering a lot with myalgic encephalomyelitis (ME) since August 9, 2012."Scott is on the core team of Millions Missing Canada. Millions Missing is a global campaign for myalgic encephalomyelitis (ME) health equality. They demonstrate around the world for equitable research funding, clinical trials, medical education and public awareness for ME.

Scott is a medal-winning triathlete who is a three-time member of the national triathlon team in his age group. But now, on good days, he says he can walk for 10 minutes on flat ground. He says he can accept his ME diagnosis with its bleak prognosis, but not the harms the Canadian health care system perpetuates on its citizens suffering with ME. He has experienced the very best research and treatment of HIV to non-existent research funding and either no or harmful treatments with ME.

In addition to our conversation with Scott, we will also feature two testimonies by Nevra Elis Ahmed from Pakistan and Gigi Joseph Garrison from the UK who suffer from ME and will share with us their experience as ME patients, as well as their worries but also their hopes.

Definition and statement sources: Millions Missing website

Disclaimer: The opinions, views and statements expressed in this podcast belong to the invited guests and do not necessarily reflect the views of the Activism Academy or the Khalifa Ihler Institute.

Trigger warning: this episode may contain sensitive language.