Understanding
Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome

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

20+ million worldwide

have ME/CFS (pre-Long COVID)*

3.3 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.

*An NIH-funded study found that new cases of ME/CFS were 15 times higher than pre-pandemic levels. According to the results, 4.5% post-COVID-19 participants met ME/CFS diagnostic criteria, compared to 0.6% participants that had not been infected by SARS-CoV-2 virus.  

These findings provide additional evidence that infections, including those caused by SARS-CoV-2, can lead to ME/CFS.

What is ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, complex, debilitating and multi-system illness involving:

  • Brain Inflammation
  • Peripheral Nervous System
  • Immune System
  • Circulatory System
  • Cellular Metabolism

This information is provided by Lucinda Bateman, MD, director of the OMF-supported Medical Education Resource Center (MERC) at the Bateman Horne Center.

What Causes ME/CFS?

The cause of ME/CFS is currently unknown, but a combination of genetic and environmental factors appear to be relevant. There are no FDA approved treatments available.
ME/CFS is a multi-system disease

ME/CFS 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

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

Diagnosing ME/CFS is complex, as no single test can confirm the condition. In 2015, the National Academy of Medicine (NAM), formerly called the Institute of Medicine, outlined diagnostic criteria applicable to both adults and children. 

These criteria require three core symptoms, with at least one of two additional symptoms, for a confirmed diagnosis.

Core symptoms:

  • Impairment of normal function accompanied by fatigue persisting >6 months
  • Post-exertional malaise (PEM)*
  • Unrefreshing sleep*


Plus at least one of the following:

  • Cognitive impairment*
  • Orthostatic intolerance (OI)


*Must be moderate-to-severe and present >50% of the time

Challenges in Diagnosing ME/CFS

Navigating Complex Symptoms

Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents unique challenges due to the broad and overlapping nature of its symptoms. Many symptoms, such as profound fatigue and cognitive difficulties—common to other illnesses like fibromyalgia and Lyme disease—require healthcare providers to perform careful assessments to distinguish ME/CFS from these conditions.

The Path Toward Better Diagnostic Tools

Currently, there are no specific laboratory tests for ME/CFS, underscoring the need for research and development in this area. The medical community is actively working towards refining diagnostic criteria and developing precise tools based on the latest scientific insights.

Empowering Patients and Providers

Given the variability of ME/CFS symptoms, a personalized approach to diagnosis is essential. Patients are encouraged to work closely with healthcare providers, documenting and communicating their symptoms accurately. This partnership is crucial for navigating the diagnosis process effectively and ensuring patients receive the care they need.

Video content by the OMF-supported Medical Education Resource Center (MERC) at Bateman Horne Center.

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!

The End ME/CFS Project logo

Download the

ME/CFS and Long COVID fact sheet

Pensive man leaning on a table. What is ME/CFS Fact sheet

Perfect for printing and sharing with your doctor or personal community.

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!

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.

Frequently Asked Questions

Is ME/CFS contagious?

No, ME/CFS is not contagious. It cannot be spread from person to person like infectious diseases.

The progression of ME/CFS varies among individuals. Some people may experience a gradual improvement in their symptoms, while others may see their symptoms worsen or experience fluctuations in the severity of their symptoms over time. Factors such as stress, infections, or other health complications can exacerbate symptoms. Careful management of triggers and symptoms is essential to prevent exacerbations.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) significantly impacts daily living, with profound fatigue that makes routine tasks challenging. This condition often leads to cognitive difficulties, such as memory issues and concentration problems, affecting work and social interactions. Physical symptoms like muscle pain and post-exertional malaise restrict activity levels and may necessitate days of recovery after even minor exertions. The unpredictable nature of the illness can cause social isolation, emotional distress, and financial strain due to reduced work capacity. Additionally, sleep disturbances further exacerbate daily fatigue, complicating overall management and quality of life.



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Read more about the diagnostic criteria
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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