Primer for family, friends and care providers

Primer for family, friends and care providers is for those who know or care for someone with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 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. This has led to the use of Graded Exercise Therapy (GET), which can severely injure persons with ME/CFS; and Cognitive Behavioural Therapy (CBT) that cannot treat a physiological disease. Exercise and exertion make patients worse triggering a myriad of chronic and disabling symptoms. The hallmark symptom is Post-exertional malaise (PEM).

ME/CFS affects up to 2.5 million Americans with estimates of 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." In 2012, the Centers for Disease Control & Prevention (CDC) estimated less than 20% of Americans that have CFS were diagnosed. Diagnosis can take years with a patient seeing several doctors before receiving a diagnosis. A 2008 ProHealth survey of 1,210 ME/CFS patients showed "29% had been ill from 6 to 20-plus years before being diagnosed."

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

MEAction provides the guide Caring for People with Myalgic Encephalomyelitis.

Disease onset and course of 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. "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma." 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.

Pediatric ME/CFS
Children are also afflicted with ME/CFS. See: Pediatric.

Prognosis
Prognosis for ME/CFS is generally poor. See: Prognosis

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 US documentary about Ryan Prior, an afflicted journalist who investigates the disease and its history and why the CDC has left millions sidelined from life; available for streaming and DVD purchase. (2015)


 * Unrest is a US documentary film that will air on PBS's Independent Lens in 2018. Jennifer Brea, a person with ME, directs. (2017)

Mini-doc & Short film

 * Invisible Illness - Stories of Chronic Fatigue Syndrome is a Palo Alto Online, US Mini-Doc on Youtube. It documents 3 people with CFS suffering from the same disease in varying degrees of illness. (2015)


 * The Last Great Medical Cover Up is a UK short Film on Vimeo with several patient interviews. (2015)

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

 * Video: 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. (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 (now titled Unrest) at 5:30 and 10:20 - Youtube (2016)

Government health organizations

 * USA


 * Centers for Disease Control (CDC)
 * Factsheets - Pediatric Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)


 * National Institutes of Health (NIH)
 * Moving Toward Answers in ME/CFS - NIH Director's Blog (2017)


 * Institute of Medicine (IOM)
 * Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts From the Institute of Medicine report. (2015)


 * Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness Report Brief on the Institute of Medicine report. (2015)

ME/CFS research foundations

 * UK


 * Invest in ME
 * Frequently Asked Questions


 * USA


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

ME/CFS organizations

 * Australia


 * Emerge Australia
 * What is ME/CFS?


 * UK


 * ME Association
 * What is ME/CFS?


 * Tymes Trust (Pediatric)
 * Pediatric ME, CFS, SEID for Families and their GPs (2016)


 * USA
 * Massachusetts CFIDS/ME & FM Association
 * About ME/CFS


 * Solve ME/CFS
 * What, Exactly, is a Biomarker Anyway? And Why Don't We Have One for ME/CFS? (2017)


 * Get the Facts about ME/CFS (2016)


 * What is ME/CFS? (2013)


 * International
 * MEAction
 * Caring for People with Myalgic Encephalomyelitis (2018) Guide for Caretakers


 * Facts about Myalgic Encephalomyelitis (ME) (Also called chronic fatigue syndrome or CFS) (2015)


 * Reports and Fact Sheets (2015)

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 - New York Times: Well (2014) With brain images.
 * Cytokine ("Notable studies")

Learn more

 * Biopsychosocial model (BPS model)
 * Primer for patients
 * Primer for the public
 * Patient groups by country