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 diseases name and and diagnosis in a video ME/CFS Diagnosis and Name.

The United States and Australia usually use the name CFS. Many European countries, the UK and Ireland use the ME name. All these countries as well as doctors and researchers worldwide also use the acronym ME/CFS. It is believed 17-20 million patients worldwide have ME/CFS. 25% of patients are severely ill and are either bed-bound, wheelchair bound or are or all but housebound.

Exercise exasperates symptoms and can injure patients further.

ME/CFS usually comes on with a flu-like illness, virus or infection where the patient is left never the same and in varying degrees of the disease; patient to patient, month to month, year to year and decade to decade. There are no approved drugs for the disease and only symptoms are treated.

Doctors are often at a loss as to how to help their patients. Psychiatry has taken an inappropriate treatment path for a biological disease. Like many auto-immune and neuro-immune diseases (Lupus, MS) the female/male infliction is 80:20. Fibromyalgia is another disease at an 80:20 split that some ME/CFS patients are diagnosed with.

Symptoms

 * Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS patients. 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 greater fatigue as well as flu-like symptoms and body pain.  Every patient experiences different levels of these symptoms and each patient will experience PEM differently according to how sick he or she is with the disease.
 * Chronic fatigue
 * Body pain
 * Cognitive dysfunction/impairments
 * Unrefreshing sleep
 * Orthostatic intolerance or POTS
 * Neuroinflammation

From ME to CFS
Incline village, Lake Tahoe, NV, USA was an outbreak that happened in 1984-1985. The Centers for Disease Control [CDC] were sent to investigate.

SEID name and diagnostic criteria
Systemic Exertion Intolerance Disease (SEID) is a diagnostic criteria proposed by the Institute of Medicine in the Institute of Medicine report. This clinical criteria was developed for clinicians in the United States and is meant for any doctor to diagnose at 6 months instead of years or even decades.

Currently used

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

Currently not used

 * Ramsey definition Clinical and Research UK

The different criteria used country to country and within a country from doctor to doctor 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 by a clinician to diagnose. Many US researchers will use Fukuda (they do use the PEM "option") and CCC in one research project.

Notable studies

 * NIH Post-Infectious ME/CFS Study is outlined by Dr. Sanjay Gupta in the article "NIH Gears Up for First-Ever Chronic Fatigue Study".

Recommended viewing

 * Forgotten Plague is a 2015 US Documentary about an inflicted 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 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 that has several patient interviews.

Other resources

 * VOAT: CFS