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.

Disease onset
CFS usually comes on with a flu-like illness, EBV, HHV, Q Fever, virus or other infections. where the patient is left never the same and with varying symptoms and disease severity fluctuating day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.

Female to male ratio
Like many auto-immune and neuro-immune diseases where mostly women are afflicted, the ME/CFS female/male patient ratio is 6:1. Fibromyalgia has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.

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, interviews and discussions

 * Chronic Fatigue: Missing Millions (Carte Blanche DSTV) TV report, South Africa (2017)


 * 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 February 2015.


 * Report brief: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness February 2015.

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