What is
ME/CFS?
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
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
- Visit OMF’s resource center to find a list of information for caregivers and people with ME/CFS and related diseases, including handouts to share with your doctor.
- Check out the US ME/CFS Clinician Coalition
- Review and share the excellent, US ME/CFS Clinician Coalition Diagnostic Guidelines with your medical provider.
- See the ME/CFS Key Facts assembled by the Institute of Medicine/National Academy of Sciences.
- The Centers for Disease Control and Prevention explains common Diagnostic Questions asked by your healthcare provider. Included on the site are some thoughtful handouts to help you navigate the diagnostic process.
- Extremely Severe ME/CFS—A Personal Account.
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!
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.
