CFS: Researching Contested Illnesses

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Researching Contested Illnesses: The Case of Chronic Fatigue Syndrome (CFS)

Iby JACOB WALKER/ in - Training on Jul 4, 2012 • 3:58 pm

" I hurt all over, felt exhausted but couldn't sleep, and no longer had

the strengths to keep my spirits up. " – Sue , May 15, 2006

When describing a case of chronic fatigue syndrome (CFS), one needs

look no further than Sue . Diagnosed in 2002, her symptoms

(muscle pain, exhaustion, sleeplessness) are not unusual and her

description of life with CFS could be straight out of medical

literature. However, Sue also has the unique position of being the

mother of two children with chronic fatigue syndrome.

In her award-winning CFS blog, Sue chronicles her family's battles

with CFS, Lyme disease, school boards, and physicians alongside their

collective triumphs. For 10 years she has provided a revealing window

into the lives of CFS sufferers and a valuable resource for families

experiencing the same disease. Not just a personal blogger, Sue has

also become a citizen-scientist, cataloguing the research and

policy-making that goes on in the CFS world in order to help her

followers make sense of the tangled discourse surrounding her disease.

The current state of CFS knowledge is a complex web of competing

opinions and promising leads that can leave patients and doctors

struggling to define and manage the illness. More recently, the world

of CFS research has also hit a major dead end.

Full essay can be found here:

http://in-training.org/researching-contested-illnesses-the-case-of-chronic-fatig\

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