The COVID-19 pandemic

It feels like it’s coming to an end

But millions are still sick.

And they’re waiting for answers.

In mid-2020, Open Medicine Foundation (OMF) launched a three-year study to find answers. We’re leading a large-scale international study following the potential conversion of Post-COVID Syndrome, also known as Long-COVID, to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS), a chronic, life-altering disease. This study is an unprecedented opportunity to find ME/CFS drug treatments and prevention strategies at an accelerated pace.

As leaders of the largest worldwide nonprofit effort to diagnose, treat, and prevent ME / CFS and related complex diseases, such as Post Treatment Lyme Disease Syndrome and Fibromyalgia, we know one thing to be true: If we don’t do the research now, millions will be left behind. Join us in our mission to find the answers.

Help fund the study

Anywhere from 25% to 35% of people who had COVID-19 have lingering symptoms

fatigue muscle aches dysautonomia sleep disturbances brain fog

“We do know for absolutely certain that there is a post-COVID syndrome…Anywhere from 25% to 35%—or more—have lingering symptoms well beyond what you would expect from any post-viral syndrome like influenza and others. It’s fatigue, shortness of breath, muscle aches, dysautonomia, sleep disturbances, and what people refer to as brain fog.”

Anthony S. Fauci, MD.

Viral
onset

Because many people develop ME/CFS after a viral infection, researchers question whether some viruses might trigger the disorder.
Source:Mayo Clinic

SARS 2003
patients

In one study, 27% of hospitalized SARS patients met the CDC’s criteria for ME/CFS one year after recovery from SARS itself.
Source:Lam et al. (2009)

Epstein-Barr
virus

About 1 in 10 infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.
Source: CDC (2018)

A percentage of those who do not recover from COVID-19 may end up with ME/CFS.

History shows us that a documented percentage of those who were sick with a post-viral syndrome will end up developing symptoms of ME/CFS.

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Post-COVID Syndrome vs. ME/CFS

The early symptoms are similar

But that could be just the beginning for those whose illness transitions to ME/CFS

Similar Major

Post-COVID Syndrome Symptoms

  • Reduction or impairment in ability to carry out normal daily activities, fatigue
  • Muscle aches
  • Dysautonomia
  • Sleep disturbances
  • Brain fog
  • Many others


ME/CFS 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) – dysautonomia
  • Brain Fog
  • Confusion & Disorientation
  • Difficulty concentrating
  • Short-term memory issues
  • Ataxia and muscle weakness
  • Hypersensitivity to noise and light
  • Postural Orthostatic Tachycardia Syndrome (POTS)
  • 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

ME/CFS Changes Lives

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
affected in USA

ME / CFS affects

men, women and children.
Anyone. Any time.

ME/CFS is a debilitating illness that has upended too many people’s lives. With no FDA-approved treatments or cure, millions have been left behind, forced to put their lives on hold as they wait for answers.  In the aftermath of COVID-19,  millions more are now at risk of developing the disease.

Learn more about ME/CFS

While the federal government
is only now investing in “Post-COVID Syndrome”

OMF has already begun a large-scale study

Solely funded by private donors

— individuals just like you.

About the study

OMF secured a $1 million grant to launch the first year of our three-year international study. It already being conducted across the globe at the OMF funded Collaborative Research Centers spearheaded by some of the world’s top researchers and ME/CFS experts. 

We are actively working to raise an additional $2 million to fund  the next two years of the study. We all need this research now. We need your help today, so millions can return to health tomorrow.

Donate now to help find the answers

Too many people already suffer from this debilitating disease, and now millions more are at risk.

Help fund the study

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OMF needs to raise an additional $2 Million
to complete the COVID-19 Study.

We need your help to finish.

Help us find the answers.
Donate to Open Medicine Foundation today!

Long COVID in the news

Confronting Our Next National Health Disaster — Long-Haul Covid

Long Covid, ME/CFS, and the Need for Allyship

The road to addressing Long Covid

Consent management

Consent Preferences

Data Subject Access Request (DSAR) Form 

Microvesicles and viral sequencing
Microvesicles are a type of extracellular vesicle that is released from the cell membrane. Vesicles are small, fluid-filled sacs or vacuoles within the body. Sequencing is a technique used to determine the exact sequence of bases (A, C, G, and T) in a DNA (or viral) molecule.
NMR Metabolomics
NMR (Nuclear Magnetic Resonance) is an instrument/tool used to perform metabolic studies, metabolic profiling, and metabolomics in biofluids and tissues for more than 40 years using magnetic fields. There is a very close connection between metabolic measurements and NMR. This connection has flourished because of NMR’s many unique strengths for characterizing complex mixtures’ chemical composition.
Proteomics
The large-scale study of proteins, which are large, complex molecules that are required for structure, function, and regulation of the human body's tissues and organs.
Immune cell profiling
The immune system has many important regulatory roles in disease development and progression. Given the emergence of effective immune therapies, reliable predictors of response are needed. Immune cell profiling determines response by evaluating immune cell populations from treated and untreated samples. For our purposes, we will evaluate the white blood cell response to the viral infection using a process called “Cytof.”
Leukocyte Genomics
A leukocyte is a colorless cell circulating in the blood and body fluids and is involved in counteracting foreign substances and disease. A genome is all genetic material of an organism. Genomics is a biology field focusing on the structure, function, evolution, mapping, and editing of genomes. Therefore, leukocyte genomics is the study of all genetic material of leukocytes.
Metabolomics
Metabolomics is a way to study metabolism – that is, through measuring amounts of the metabolites (small molecules) produced by our bodies as we convert food into energy and other molecules that our cells need to survive. Metabolomics technology is ‘large-scale,’ meaning that several thousand metabolites can be measured from a single sample of e.g., blood or urine.
Micro RNA
Cells use Micro RNA to control whether a particular gene is making too much, too little or the normal amount of its protein at a particular time.
Autoantibodies
Antibodies that react with self-molecules and that occur in healthy individuals and are referred to as natural antibodies or autoantibodies.
Extracellular DNA for viral reactivation and Mitochondrial DNA
exDNA (extracellular DNA), exDNA is often secreted actively and is used to perform several tasks, thereby offering an attractive target or tool for biotechnological, medical, environmental, and general microbiological applications. Viruses are intracellular parasites that rely to a significant extent on the host cell for replication. Viral reactivation occurs when an active replication of the viral genome results in a lytic (degradation of the cell) infection characterized by the release of new progeny (descendant) virus particles.