Primer for patients

This Primer for patients will provide information you need to know about your personal diagnosis as well as your treatment options. A diagnose of Chronic Fatigue Syndrome, (CFS) Myalgic encephalomyelitis (ME) or ME/CFS is not just a disease spectrum of many names, it is also one that can be very different with severity and symptoms from patient to patient. Dr. Nancy Klimas addresses the disease name controversy and diagnosis in a video ME/CFS Diagnosis and Name.

Disease Onset
ME/CFS usually comes on with a flu-like illness, virus or infection 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.

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 exasperating 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 (see IOM Clinicians Guide)

 * Orthostatic intolerance
 * POTS
 * Cognitive dysfunction
 * Unrefreshing sleep
 * Chronic fatigue
 * Chronic pain
 * Immune Impairment
 * Infection

US Government guides on symptoms

 * The Institute of Medicine report - Clinicians Guide
 * CDC - CFS Symptoms

Canada guides on symptoms

 * Alberta Clinicians Guide

Other symptoms, comorbids

 * Neurologic impairments - ME: ICC
 * Fibromyalgia, Irritable bowel syndrome, Temporomandibular joint disorder (TMJ) and Multiple Chemical Sensitivity

Expanded lists of symptoms

 * Chronic Fatigue Syndrome Symptoms - The Monster List!


 * What are the symptoms of ME/CFS?

GET and CBT
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 advocate and research organizations nor by many doctors and researchers. These therapies are promoted through the PACE trial and most the aforementioned are opposed to the trial as the study used outcome switching and poor design which swept in patients who were not suffering from CFS, ME or ME/CFS but most likely from Chronic Fatigue.

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

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

Recommended viewing

 * Forgotten Plague is a 2015 US Documentary about 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.
 * 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.
 * 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.
 * Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education (CDC Video, 2016)

Learn more

 * By country: Diagnosis, treatments, insurance, disability, etc.
 * Doctors
 * Research
 * Blood donation
 * Outbreaks
 * Fibromyalgia
 * Primer for the public

Other Resources

 * Twitter #mecfs Connect with patients and caregivers around the world and get all the latest research, news articles, great blogs and support.
 * VOAT: CFS A pinboard site with lots of research, articles, videos, blogs, more!
 * About.com Health FMS/ME/CFS Well written articles with simply stated facts about ME/CFS and Fibromyalgia (FMS).
 * Health Rising Forums for everything ME/CFS/FMS. Connect with others about the latest research, supplements and treatments. Read articles by Cort Johnson.
 * Phoenix Rising Citizen Scientists are ready to debate the latest ME/CFS science.
 * MDJunction Support for patients and caregivers from patients and caregivers. Connect and make friends with others who know exactly what you are going through.