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What is
ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a life-altering multi-system chronic, complex disease (msCCD). 

Over 20 million people

have ME/CFS worldwide

1 - 2.5 million

are affected in the USA alone

Estimated 70% cannot work

25% are homebound

No diagnostic test

No FDA approved treatment
No cure

Huge economic burden

36-51 billion dollars
per year in the USA

ME / CFS affects

men, women and children.
Anyone. Any time.

A life altering disease

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multi-system disease with many symptoms that may change over time and differ from patient to patient. The most common symptoms of ME/CFS are post-exertional malaise (worsening of symptoms upon even minimal exertion), unrefreshing sleep, profound fatigue, cognitive impairment, orthostatic intolerance, and pain.

The cause of ME/CFS is currently unknown, but a combination of genetic and environmental factors appear to be relevant. There are no specific diagnostic tests or FDA approved treatments available.

Jump to
Symptoms
Diagnosis
Research
Resources
ME/CFS is a multi-system disease

Symptoms

Not only do symptoms vary in type but also in severity, ranging from mild to severe. An estimated one in four patients are housebound or bed bound and many of the most severely affected need to be fed by tube.

There are over 60 symptoms reported by people with ME/CFS. The common symptoms are listed but not limited to what may define an individual experience.

Currently, there is no laboratory diagnostic test. Due to a symptom set that overlaps with several other diseases, clinical assessment and symptoms and the exclusion of other diseases are necessary for accurate diagnosis.

Most Common Symptoms

Main Diagnostic Symptoms

Post-exertional malaise (PEM) - symptoms worsen after exertion

Reduction or impairment in ability to carry out normal daily activities, accompanied by Profound Fatigue

Unrefreshing sleep

Cognitive Impairment

Orthostatic intolerance (symptoms worsen when sitting or standing upright)

Severe body pain and worsening headaches

Neurological or Cognitive Symptoms

Brain Fog

Confusion & Disorientation

Difficulty concentrating

Short-term memory issues

Ataxia and muscle weakness

Hypersensitivity to noise and light

Autonomic, Immune & Digestive Symptoms

Orthostatic intolerance

Postural Orthostatic Tachycardia Syndrome (POTS)

Dysautonomia

Irregular heartbeat

Increased heart rate on standing

Recurrent flu-like symptoms

Sweating, fever, chills and night sweats

Nausea & Irritable Bowel Syndrome

New sensitivities to food, medication, chemicals

Recurring sore throat

Joint pain without swelling or redness

Tender lymph nodes

Light-headedness

Shortness of breath

Change in body weight

Temperature instability

Change in appetite

People with ME/CFS often go years before diagnosis, and 90% of sufferers have never been properly diagnosed.

Diagnosis

You play a vital role in helping healthcare providers understand your symptoms (or your family member’s symptoms) and how they affect your daily life. Open Medicine Foundation hopes to empower you to take care of your health today, while we search for answers for tomorrow.

helpful resources

What's it going to take to eradicate this disease?

Research

Today, the landscape of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) research is growing with the outlook for people with ME/CFS brighter than ever.

The End ME/CFS Project encompasses OMF funded and facilitated research conducted at six ME/CFS Collaborative Research Centers (CRCs) across the globe. OMF’s guiding strategy focuses on open, collaborative research so that precise diagnostic tools and life-changing treatments can be available to people with ME/CFS and related chronic complex diseases as soon as possible.

Support Open Medicine Foundation’s quest to find effective treatments and diagnostic tests for the millions of people affected by ME/CFS!

Read about The END ME / CFS Project
The End ME/CFS Project logo

Support OMF

Support Open Medicine Foundation’s quest to find effective treatments and diagnostic tests for the millions of people affected by these devastating diseases!

Donate now

Disclaimer: This website is for informational purposes only. The information provided on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Other links you might be interested in:
Melbourne ME/CFS Collaboration
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Centers for Disease Control and Prevention (CDC)

Holmes 1988

This was the first definition put together by the CDC and the first to coin the term “chronic fatigue syndrome” (CFS). The definition required persistent fatigue along with 8 of 11 specific symptoms under the categories of short-term memory issues, pain, sleep disturbance, post-exertional malaise and flu-like symptoms. This diagnosis was very specific and hard to utilize in a clinical setting for diagnosis.
Holmes CDC 1988
Centers for Disease Control and Prevention (CDC)

Fukuda 1994

This definition is a revision of the Holmes definition except it requires half the number of symptoms to make a diagnosis. This diagnosis was much easier for clinicians and significantly increased the incidence of CFS numbers globally. It has been criticized for being too easy to misdiagnose.
Fukuda CDC 1994

Canadian Consensus Criteria (CCC) 2003

From a look at Table 1 you can see a significant change in the definitions from Holmes and Fukuda to the CCC 2003. This was the first definition to incorporate CFS with the Myalgic Encephalomyelitis (ME) definition by Dr Ramsay several decades earlier. This definition requires post-exertional malaise (PEM), fatigue, pain, sleep disturbance, a couple neurocognitive issues and symptoms from the immune, endocrine and autonomic systems. This diagnosis emphasized the multi-system component of the illness and attempted to homogenize the cohort diagnosed by requiring several specific symptoms. One of those specific symptoms, PEM, is clearly the most distinguishing feature of ME/CFS.
Canadian Consensus Criteria 2003

The improvement of research and SEID

The definition was further refined by the Institute of Medicine in 2015 to create a diagnosis that incorporated the most up-to-date research while providing a simple diagnosis in the clinical setting. The definition was a departure from all previous definitions and was therefore given a new name, Systemic Exertion Intolerance Disease (SEID). This definition is most similar to CCC in that it requires fatigue, PEM and sleep disturbance. Unlike CCC this definition only required cognitive problems or orthostatic intolerance, instead of having a broad range of symptoms to signify the multi-system component of the illness. Simplifying the diagnosis like this is beneficial to research for building cohorts around specific symptoms that are common throughout.
Institute of Medicine 2015
Read more about the diagnostic criteria
Holmes 1988
Fukuda 1994
CCC 2003
IOM 2015
CCC 2003

International Consensus Criteria (ICC) 2011

The CCC was further developed in 2011 to form the International Consensus Criteria (ICC). This was the first modern definition to not include fatigue as a required symptom and to not require 6 months of symptoms persisting to be diagnosed. PEM is the only required symptom. As compared to the CCC definition, the ICC definition puts a greater emphasis on the multi-system component of the illness, requiring more symptoms from the immune and endocrine systems. Removing fatigue as a necessary symptom and the minimum of 6 months for diagnosis enables the differentiation of ME from CFS for considerations in research and treatment.
International Consensus Criteria 2011

Consent management

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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