Primer for the public

Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) and ME/CFS are names used in different countries for what is believed to be the same disease spectrum. Dr. Nancy Klimas addresses the disease name controversy and diagnosis in a video ME/CFS Diagnosis and Name.

Disease names and acronyms around the world
The United States and Australia usually refer to the disease as CFS. Many European countries, the UK and Ireland mostly use the ME name. Most countries as well as doctors and researchers worldwide will also use the acronym ME/CFS and a few CFS/ME.

The symptom Chronic fatigue (CF) should not be used in place of the name Chronic Fatigue Syndrome (CFS); this has been a source of confusion of CF the symptom and CFS the disease.

ME
Although many similar disease have occurred for centuries, in the 1920s - 1940s there were sporadic outbreaks around the world, of both poliomyelitis, and what Dr. Melvin Ramsay called 'Benign Myalgic Encephalomyelitis' ('benign because it is disabling but not usually fatal). In 1969, the World Health Organisation included "Myalgic Encephalitis' in its 'International Classification of Diseases' (ICD), under the category 'Diseases of the Nervous System', code G93.3.

From ME to CFS
Incline village, Lake Tahoe, NV, USA experienced an outbreak during 1984-1985. The Centers for Disease Control (CDC) were sent to investigate. Dr. Anthony Komaroff studied cases from the outbreak and eventually he and a body of clinicians settled on the name "Chronic Fatigue Syndrome". Dr. Komaroff discusses the name emerging in the documentary film Forgotten Plague.

SEID name and diagnostic criteria
Systemic Exertion Intolerance Disease (SEID) is a diagnostic criteria proposed by the Institute of Medicine (IOM) in the Institute of Medicine report. This clinical criteria was developed for doctors in the United States to diagnose at 6 months instead of years or even decades. Doctors are encouraged to perform tests prior to six months, such as a Tilt table test or sleep study if symptoms require further investigation. Treating symptoms such as Orthostatic intolerance or a sleep disorder can begin prior to the six months needed to diagnose.

Disease onset and numbers
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. There are no approved drugs for the disease and only symptoms are treated. "An estimated 17-20 million people suffer from ME/CFS worldwide, and 25% of them have a very severe form of it." The 25% of patients who are severely ill are either bed-bound, wheelchair bound, or are housebound or nearly so. The ME/CFS Severely Ill, Big Data Study is focused on this 25%.

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

All races and cultures are afflicted with ME/CFS. Children and adolescents are also diagnosed. Tymes Trust is a UK charity dedicated to helping children with ME.

Hallmark symptom

 * Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS. After exertion (which for some patients can be a shower, others grocery shopping or socializing, while some just walking to the mailbox) there is a payback which can be delayed 24-48 hours. 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.

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

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?

No drugs, appropriate treatments or therapies
There are no approved drugs or appropriate treatments or reliable therapies for ME/CFS. Doctors are often at a loss as to how to help their patients.

Controversy
Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, GET and CBT are employed by ME Clinics. Exercise exacerbates symptoms and can further injure patients. Depression and anxiety drugs are utilized usually with poor and even damaging results.

Treating a biologic disease as a mental illness is cost effective. The drugs are inexpensive and biomedical research is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue and disability clauses on insurance policies excluding a mental health illness/disease kick in stopping any payment.

The ME/CFS community have empathy for those suffering from mental health issues and understand the importance of mental health care but it isn't what this disease is about; no more than MS, Lupus, Lyme, or ALS are mental health diseases.

Working with government to move forward
Advocates met with senate staffers the week of March 16, 2016 and discussed research and drug development by the NIH, the CDC reinstating and increasing funding and education based on IOM recommendations, and the HHS funding to develop Centers of Excellence.

Currently used

 * Fukuda criteria (Sometimes referred to as CDC Criteria) Research: United States, Australia, Canada, Europe, UK, N. Ireland; Clinical: United States
 * Canadian Consensus Criteria (CCC) Clinical: Canada, Republic of Ireland; Research: Canada, Republic of Ireland, United States
 * Oxford criteria Clinical: Australia, N. Ireland, UK
 * International Consensus Criteria (ICC) Clinical
 * Reeves criteria (Sometimes called Empirical definition) Research: United States
 * SEID Research: United States

Currently not in use

 * Holmes criteria
 * London criteria
 * Nightingale criteria
 * Ramsey definition Clinical and Research: UK
 * NIOF Case Definition: Australia

The different criteria used from one country to another and within a country from one doctor to another and researcher to researcher results in confusion for doctors trying to diagnose, bad research and discord between patients, medical professionals and charitable organizations. Adding to the confusion is a clinical criteria will at times be used in research and a research criteria used by a clinician to diagnose. Many US researchers will use Fukuda (they do use the PEM "option") and CCC in a single research project. The NIH Post-Infectious ME/CFS Study will be using four: SEID, Fukuda, CCC and Reeves. The ME/CFS community want to participate in this study's design.

Current

 * NIH Post-Infectious ME/CFS Study is outlined by Shannon Firth; Editor Dr. Sanjay Gupta in the article "NIH Gears Up for First-Ever Chronic Fatigue Study". An Open Letter from Mary Schweitzer to Dr. Gupta on this article.
 * Dr. Derek Enlander of Mount Sinai, NY has announced a study to prove or disprove exercise as treatment for ME/CFS patients. (Begin at 17:30 of video.)
 * ME/CFS Severely Ill, Big Data Study by the Open Medicine Foundation.

Completed

 * Cytokine research by Mady Hornig and Ian Lipkin show Immune Signatures. Columbia University Mailman School of Public Health (With video)
 * Study finds brain abnormalities in chronic fatigue patients - Stanford ME/CFS Initiative
 * Illness progression in chronic fatigue syndrome: a shifting immune baseline
 * National Centre for Neuroimmunology and Emerging Diseases claim to have a biomarker test.

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 Youtube 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.

Learn more

 * List of outbreaks
 * List of acronyms
 * Natural killer cell
 * Vagus nerve hypothesis
 * Ampligen
 * Rituximab
 * Patient mental health
 * Karina Hansen

Other resources

 * VOAT: CFS
 * About.com Health FMS/ME/CFS