Chronic fatigue syndrome
As of February 2013, the CDC recognized that more than one million Americans have CFS. The February 2015 Institute of Medicine report stated that there are 836,000 to 2.5 million ME/CFS patients. The Prognosis for ME/CFS is generally poor.
Chronic Fatigue Syndrome should be distinguished from chronic fatigue (CF), which is a symptom of many different conditions, though not a condition in its own right. These terms are often confused by the media, healthcare practitioners, and the general public. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies. Dr. Jarred Younger explains chronic fatigue and begins by stating "Fatigue is not a disease and it is not even a symptom. So fatigue is a alarm system and the most general alarm system the body has." Webinar with Jarred Younger, Ph.D. (@6:04-7:54)
- 1 Symptoms
- 2 Clinicians guides
- 3 Disease onset and course of illness
- 4 Clinical course
- 5 Name controversy
- 6 Notable studies
- 7 History
- 8 Learn more
- 9 See also
- 10 References
- 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 exacerbate 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 below)
Other symptoms, comorbids
- Neurologic impairments - ME: ICC
- Fibromyalgia, Irritable bowel syndrome, Temporomandibular joint disorder (TMJ) and Multiple Chemical Sensitivity
Expanded lists of symptoms
US Government guides on symptoms
Canada guides on symptoms
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.
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.
From the Centers for Disease Control (CDC): What's the Clinical Course of CFS?
- The severity of CFS varies from patient to patient. Some people can maintain fairly active lives. For most patients, however, CFS significantly limits their work, school, and family activities for periods of time.
- While symptoms vary from person to person in number, type, and severity, all CFS patients are limited in what they can do to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions.
- CFS often affects patients in cycles: Patients will have periods of illness followed by periods of relative well-being. For some patients, symptoms may diminish or even go into complete remission; however, they often recur at a later point in time. This pattern of remission and relapse makes CFS especially hard for patients to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, but this overexertion may actually contribute to a relapse.
- The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that patients benefit when accompanying conditions are identified and treated and when symptoms are managed. High-quality health care is important.
The name Chronic Fatigue Syndrome is controversial, as many consider it stigmatizing. For decades, patient advocates have been lobbying the CDC to instead use the name Myalgic Encephalomyelitis (ME), though the CDC has refused. Most patients and patient organizations prefer the name ME, or the hybrid ME/CFS.
In February 2016, Dr Anthony Komaroff, who was part of the CDC group of clinicians who coined the name Chronic Fatigue Syndrome, said of it: "I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real".
- 2016, A six-year longitudinal MRI study found that Chronic Fatigue Syndrome (per Fukuda & Canadian Consensus Criteria) is associated with decreases in white matter, gray matter and blood volume deficits in the brain as compared to healthy controls.
- 2016, Dr. Jose Montoya and Dr. Michael Zeineh's brain imaging studies show CFS patients suffer 3 brain abnormalities: an overall reduction in white matter; consistent abnormality in the right arcuate fasciculus; thickened gray matter at two areas of the brain connected by the right arcuate fasciculus.
- 2014, Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder - New York Times: Well (2014) With brain images.
- Osler's Web is a book on the early history of CFS.
- Thirty Years of Disdain picks up on the ME/CFS history where Osler's Web leaves off.
- Forgotten Plague 2015 documentary on the CDC and US patient history of CFS.
- List of news articles on ME and CFS
- Sophia Mirza's life ended due to CFS.
- UK agencies involved in implementation of the PACE trial. Disabled in Tory Britain - PACE trial
- Systemic Exertion Intolerance Disease (SEID) is the Institute of Medicine report's name and diagnostic criteria.
- Primer for the public An extensive overview of the disease(s) ME, CFS, ME/CFS and SEID, their criteria, history, research and more.
- PACE trial The highly controversial UK trial that led to the implementation of Graded exercise therapy (GET) and Cognitive behavioral therapy (CBT) as treatment paths for CFS.
- Fatigue 'Virus' Has Experts More Baffled And Skeptical Than Ever - NY Times July 1987
- Chronic Fatigue Syndrome - CDC
- Institute of Medicine (USA); Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (10 February 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
- Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By: Adrienne Dellwo
- Chronic Fatigue Versus Chronic Fatigue Syndrome What's the Difference? - About.com Health FMS/ME/CFS - By Carol Eustice
- Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts
- Chronic Fatigue Syndrome - Symptoms - Web MD
- Post-Exertional Malaise - About.com Health - FMS/ME/CFS
- - What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America
- Myalgic encephalomyelitis: International Consensus Criteria - Wiley - Journal of International Medicine
- What is ME/CFS? - Solve ME/CFS Initiative
- IOM Report - INFECTION
- The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014
- Definitions of ME and CFS - MEpedia
- Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc
- Symptoms and diagnosis of ME/CFS - ME Association
- Chronic Fatigue Syndrome - Symptoms - Web MD
- Facts (ME/CFS) Severity
- Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
- Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
- Fibromyalgia - CDC
- What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
- What's the Clinical Course of CFS? - CDC
- A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name - Chronic Fatigue Support
- Komaroff, Anthony; Iskander, John (17 Feb 2016), "Interview with Dr Anthony Komaroff", CDC Public Health Ground Rounds - Beyond the Data - Chronic Fatigue Syndrome: Advancing Research and Clinical Education
- Shan, ZY; Kwiatek, R; Burnet, R; Del Fante, P; Staines, DR; Marshall-Gradisnik, SM; Barnden, LR (2016-04-28), "Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study", Journal of magnetic resonance imaging: JMRI, doi:10.1002/jmri.25283, PMID 27123773
- Jaime S (2016-05-05), "Progressive Brain Changes in Patients with Chronic Fatigue Syndrome: Are our Brains Starved of Oxygen?", #MEAction
- Chronic Fatigue Patients Suffer 3 Major Brain Abnormalities; Findings May Lead To Clearer Diagnosis. - Patient Health Care