Primer for family, friends and care providers

ME/CFS is a complicated and life altering systemic, biological neuro-immune disease. Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.

Chronic Fatigue Syndrome (CFS) is not Chronic Fatigue. It is not a psychiatric illness or "illness belief" which is the widely accepted hypothesis in the UK. Exercise and exertion make patients worse triggering a myriad of chronic and disabling symptoms. The hallmark symptom is Post-exertional malaise.

Documentary

 * Forgotten Plague is a 2015 US documentary about Ryan Prior, an afflicted journalist who investigates the disease and its history and why the CDC has left millions sideline from life; available for streaming and DVD purchase.


 * Unrest is a US documentary film due to release in 2017. Jennifer Brea, a person living with ME, directs.

Mini-doc & Short film

 * Invisible Illness - Stories of Chronic Fatigue Syndrome is a 2015 Palo Alto Online, US Mini-Doc on Youtube. It shows 3 patients suffering the same disease to varying degrees.
 * The Last Great Medical Cover Up is a 2015 UK short Film on Vimeo with several patient interviews.

Shorts

 * #MillionsMissing provides a <5 min. short UK Video What Is M.E.? and the disease impact with several patients featured. 2016.

Talks and discussions

 * What happens when you have a disease doctors can't diagnose Jennifer Brea gives a TED Talk to explain her psychiatric misdiagnosis of Conversion disorder, her correct diagnosis of Myalgic encephalomyelitis, the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. June, 2016.


 * Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film Canary in a Coal Mine at 5:30 and 10:20. 2016.

#MEAction

 * ME Fact Sheet: Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS)


 * Reports and Fact Sheets

Institute of Medicine

 * Fact Sheet: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts


 * Report brief: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness

Other reading

 * What Do You Do When a Loved One Becomes Chronically Ill? By: Suzan Jackson

Research

 * Dr. Anthony Komaroff Webinar Hot Areas in ME/CFS Research, 2016
 * Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education CDC Video, 2016

Learn more

 * Institute of Medicine
 * Institute of Medicine report
 * #MEAction
 * Patient groups by country
 * Primer for the public