When Harvard PhD student Jennifer Brea is struck down at 28 by a fever that leaves her bedridden, doctors tell her it’s "all in her head." Determined to live, she sets out on a virtual journey to document her story—and four other families' stories—fighting a disease medicine forgot.
Inside the dramatic search for a cure to ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). 17 million people around the world suffer from what ME/CFS has been known as a mystery illness, delegated to the psychological realm, until now. A scientist in the only neuro immune institute in the world may have come up with the answer. An important human drama, plays out on the quest for the truth.
‘Voices from the Shadows’ shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. These were filmed and edited between 2009 and 2011, by the brother and mother of an ME patient in the UK. It shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the severe amplification of symptoms that can be caused by increased physical or mental activity or exposure to stimuli, and by further infections. A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations similar to those shown in the film continue to occur.
In 1984-85, people at Lake Tahoe fell ill with flu symptoms, but they didn't get better. Medical literature documents similar outbreaks: in 1934 at LA county hospital, in 1948-49 in Iceland, in 1956 in Punta Gorda, Florida. The malady now has a name, chronic fatigue syndrome, and filmmaker Kim Snyder, who suffered from the disease for several years, tells her story and talks to victims and their families, and to physicians and researchers: is it viral, it is psychosomatic, is it one disease or several (a syndrome) ; what's the CDC doing about it; what's it like to have a disease that's not yet understood? Her inquiry takes her to Punta Gorda and to a high-school graduation.
