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.

Diagnosis and research is complicated by the fact that several definitions and criteria have been developed over several 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.

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?

Prognosis
Three Stages and Poor Long Term Prognosis

Dr. David Bell, who serves on the Scientific Advisory Board for the Open Medicine Foundation, discusses three stages of the disease in the article Prognosis of ME/CFS. At the first stage, there is an acute illness where EBV is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different." Second stage "occurs when the symptoms do not disappear, but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal." In the third stage patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."

Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long term prognosis and it is actually poor as "full recovery from untreated CFS is rare."

Few Return to Pre-illness State of Functioning

In about 40% of people with ME/CFS the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.

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

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)

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)

National Institutes of Health

 * Moving Toward Answers in ME/CFS (Mar 2017)

Open Medicine Foundation

 * What is ME/CFS?

#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 (Feb 2015)


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

National Organization for Rare Disorders (NORD)

 * Myalgic Encephalomyelitis

Other reading

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

Learn more

 * By country: Diagnosis, treatments, insurance, disability, etc.
 * Doctors
 * Research
 * Blood donation
 * Outbreaks
 * Fibromyalgia
 * Notable studies

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.
 * Reports and Fact Sheets