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

What is
Fibromyalgia?

Fibromyalgia is one of the most common chronic pain conditions that causes widespread pain, tenderness, fatigue, sleep problems, and other health conditions

4 million people

in the US live with fibromyalgia

Women are 2X

more likely to have fibromyalgia than men

Fibromyalgia pain affects every aspect of life

The CDC states that there are about 4 million people in the US (about 2 percent of the adult population) with fibromyalgia compared with about 1-2.5 million people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS).

There is a substantial overlap between Fibromyalgia and ME/CFS, especially in demographic and clinical similarities/symptoms.

Our pioneering mission at OMF is to solve under-researched and under-funded chronic complex diseases including ME/CFS, Fibromyalgia (FM) and Post-treatment Lyme Disease Syndrome (PTLDS) / chronic / persistent Lyme Disease.  Many of these diseases have overlapping symptoms. Breakthroughs in one disease will shed light on the others.

Fibromyalgia is a multi-system disease

Symptoms

Although chronic, widespread body pain is the primary symptom of fibromyalgia, a variety of other symptoms are common in FM patients.

Most Common Symptoms

Pain and stiffness all over the body

Fatigue and tiredness

Depression and anxiety

Sleep problems

Problems with thinking, memory, and concentration

Headaches, including migraines

Environmental sensitivities

Other Symptoms

Tingling or numbness in hands and feet

Pain in the face or jaw, including disorders of the jaw known as temporomandibular joint syndrome (also known as TMJ)

Digestive problems, such as abdominal pain, bloating, constipation

Irritable bowel syndrome (IBS)

Doctors usually diagnose fibromyalgia using the patient’s history, physical examination, X-rays, and blood work.

Diagnosis

There are no diagnostic biomarkers for fibromyalgia and it can typically take five years for a patient to receive an accurate diagnosis.

To aid in the diagnosis, OMF is developing a patient-driven tool named “Personalized Automated Symptom Summary (PASS)” that is intended to aid a clinician to more efficiently define the character and priorities of symptoms for patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS), PTLDS/chronic/persistent Lyme disease, or Fibromyalgia.

The overall strategy is to reduce the time spent by a clinician to evaluate and diagnose a patient with a chronic illness. The intent is to bridge the communication gap between patient and doctor, helping patients to more accurately and efficiently convey their symptoms to their treating physician.

There is no cure for fibromyalgia

Progress

Treatment is typically prescribed by a rheumatologist and focused on the management and relief of symptoms. A multi-disciplinary approach is usually recommended.

Progress in ME / CFS research will help find answers for Fibromyalgia. Therefore, understanding ME / CFS and Fibromyalgia are crucial to improving the lives of millions.

We remain confident that OMF’s open, collaborative and unique approach to research will give more answers for all.

 

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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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