Primer for family, friends and care providers

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (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 beliefs" 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.

ME/CFS affects up to 2.5 million Americans and 17 million worldwide. "A quarter of all patients are entirely house-, bed- or wheelchair bound. One in ten dies prematurely due to major organ failure, cancer, heart disease or suicide."

Diagnosing is difficult as there is no biomarker and there are numerous definitions and criteria that have been developed and utilized over the decades. See: Defintions of ME and CFS.

Disease onset and lifelong illness
The disease ME/CFS is diagnosed when a person does not recover from a flu-like illness, EBV, Mononucleosis, HHV, Q fever, Virus or other infections and meets one or more diagnostic criteria for either ME, CFS or ME/CFS. Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate 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. Overall, prognosis is poor.

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 2017 US documentary film that will air on PBS's Independent Lens in 2018. Jennifer Brea, a person 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 documents 3 people with CFS suffering from the same disease in varying degrees of illness.
 * 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.?' Discusses the disease impact on several people with ME. (2016)

News media

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

Talks and interviews

 * 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)

Government health organiztions
National Institutes of Health (NIH)
 * Moving Toward Answers in ME/CFS (Mar 2017)

Institute of Medicine (IOM)
 * Fact Sheet: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts (Feb 2015)


 * Report brief: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness (Feb 2015)

ME/CFS research foundations
Open Medicine Foundation (OMF)
 * What is ME/CFS?

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


 * Reports and Fact Sheets

Other organizations
National Organization for Rare Disorders (NORD)
 * Myalgic Encephalomyelitis

Other reading

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

Research avenues

 * 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)

Notable studies

 * Metabolic features of chronic fatigue syndrome (2016)
 * Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder With brain images. (2014)
 * Cytokine ("Notable studies")

Learn more

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