Talk:Chronic fatigue syndrome

Change of main photo

Current: Malaise_Cropped.KPG

The main photo is not a photo of someone who actually has CFS, and looks to me more like someone tired/sleepy rather than ill. The other photos of those with CFS on the page are from when they were well. I would like to get some different and realistic photos for the page.

Separately, it might be better to have a symptom-type diagram as the first / main picture, with photos under it.

Chronic Fatigue Syndrome-symptoms-diagram.jpg

Any thoughts or suggestions? ~Njt (talk) 23:29, February 4, 2022 (UTC)

Re: Change of main photo -- Justin Reilly (talk) 15:06, April 24, 2023 (UTC)

Agree. Can someone delete this? I don’t have enough edits to edit a semi-protected page. Thanks! 🙏🏻

Prevalence

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)

Symptoms

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 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)

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

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?

Clinicians guides

US Government guides on symptoms

• The Institute of Medicine report - IOM Clinicians Guide
• CDC - CFS Symptoms

Canada guides on symptoms

• Alberta Clinicians Guide

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.

Jennifer Brea gives a WMC Live radio interview addressing F/M auto-immune ratio and the disease at 5:00.

Clinical course

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.

Name controversy

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".

Dr. Nancy Klimas discusses the name controversy in the video ME/CFS Diagnosis and Name.

Notable studies

• 2016, Metabolic features of chronic fatigue syndrome

• 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.

History

• 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]

Learn more

• Definitions of ME and CFS
• Neuroimaging
• Pediatric

See also

• 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.
• XMRV

See chronic fatigue syndrome.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

See myalgic encephalomyelitis.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See National Academy of Medicine.

involving, related to or in the area of the kidneys

renal involving, related to or in the area of the kidneys

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.