Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

What is
ME/CFS?

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

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

$17 to 24 billion in 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.

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 five 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.

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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®

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo