Primer for patients

This Primer for patients will provide the information you need to better understand your personal diagnosis of Chronic Fatigue Syndrome, (CFS) Myalgic encephalomyelitis (ME) or ME/CFS which can be very different with severity and symptoms from patient to patient.

You will need to educate yourself about your disease and discuss your very real symptoms with your doctor. ME/CFS is well known but outside of relatively few studies has not been approached as a biological illness. Unfortunately, a psychiatric approach has been taken with ME/CFS, but this is changing. At this time there are no approved treatments. Graded exercise therapy and Cognitive behavioral therapy are used in the UK inappropriately for treating ME/CFS.

A 2015 study by the Institute of Medicine recognized the ME/CFS disease burden to be up 2.5 million Americans and "the direct and indirect economic costs of ME/CFS to society are estimated to be approximately over $17 to $24 billion annually." There are an estimated 17 million people with ME/CFS worldwide. A 2008 Centers for Disease Control & Prevention (CDC) study which used a CFS definition to diagnose, Fukuda criteria, noted, "Of the one to four million Americans who have CFS, less than 20% have been diagnosed."

Take time when you are able to review this Primer. Because you are not well this can be overwhelming at times so only do what you are mentally and physically able.

Disease onset and course of illness
Most likely your ME/CFS was diagnosed because you did not recover from a flu-like illness, EBV, Mononucleosis, HHV, Q fever, Virus or other infections and your symptoms meet one or more diagnostic criteria for either ME, CFS or ME/CFS. Your health may never be the same and you will experience numerous symptoms and disease severity which can fluctuate day to day, week to week, month to month, year to year, and unless treatments are discovered you may be unwell for many years just as many with ME/CFS have been. Symptoms and disease severity vary among patients.

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

Prognosis
Unfortunately, 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.

Hallmark symptom

 * Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS. After physical or mental exertion (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. The patient will experience even greater fatigue as well as exasperate the flu-like symptoms and body pain. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.


 * Regarding PEM the CFIDS Association of America states: "This is a term which describes a symptom in which exercise or exertion can bring on malaise (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold)."

Core and additional symptoms
The Institute of Medicine report (USA) listed these core symptoms in the Clinicians Guide:
 * Chronic fatigue
 * Post-exertional malaise (PEM) This is a Hallmark Symptom of CFS, ME and ME/CFS
 * Unrefreshing sleep
 * Cognitive dysfunction
 * Orthostatic intolerance
 * Chronic pain
 * Immune system Impairment
 * Infection

Expanded lists of symptoms

 * What are the symptoms of ME/CFS? By: Solve ME/CFS


 * Chronic Fatigue Syndrome Symptoms - The Monster List! By: About.com Health FMS/ME/CFS


 * Postural orthostatic tachycardia syndrome (POTS) is a form of Orthostatic Intolerance.

Tests to discuss with your doctor

 * Sleep study for Sleep apnea, Restless leg syndrome, Sleep disturbances.
 * Tilt table test for Orthostatic intolerance, POTS.
 * Natural killer cell

Graded exercise therapy & Cognitive behavioral therapy
Graded exercise therapy (GET) and Cognitive behavioral therapy (CBT) are usually employed in the UK, Ireland and some parts of Europe through ME Clinics. They are highly controversial and not recommended by patients, most patient advocates, and research organizations nor by many doctors or researchers outside of the UK. Based on the flawed PACE trial which used the flawed Oxford criteria to diagnose and recruit patients, GET and CBT found its way into treating people with ME/CFS.

Exercise, especially GET, can injure an ME/CFS patient further.


 * This is an experience of serious injury due to GET shared by K. Miles, via Tom Kindlon on Twitter.
 * Doctor Speedy was also seriously injured by GET.
 * Jennifer Brea walked home from her Neurologist's office and became wheelchair bound.

Documentary

 * Forgotten Plague is a US documentary about Ryan Prior, a journalist with ME/CFS, 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. (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
 * Get the Facts about ME/CFS (2016)


 * What is ME/CFS? (2013)


 * International
 * MEAction
 * 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

Connect with organizations and other persons with ME/CFS

 * For information and support, you may want to review materials offered by a patient group in your area.


 * See: Patient groups by country


 * Health Rising has forums where you can ask questions, get support, and read about the latest research.


 * There are many research initiatives around the world working on ME/CFS.


 * See: Research initiatives by country


 * Solve ME/CFS produces printed, online and e-mail newsletters. Take their Do I have ME/CFS? QUIZ

Learn more

 * Definitions of ME and CFS Diagnostic clinical and research criteria for ME, CFS and ME/CFS
 * Blood donation
 * Outbreaks
 * Notable studies

Other resources

 * Twitter #mecfs Connect with patients, caregivers, and ME/CFS organizations for support, articles, and research.
 * VOAT: CFS A pinboard site with research, articles, videos and more!
 * About.com Health FMS/ME/CFS Well written articles with simply stated facts about ME/CFS and Fibromyalgia.
 * Phoenix Rising Citizen Scientists debate the latest ME/CFS science.
 * MDJunction Support for patients and caregivers from other patients and caregivers.