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.

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.

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
virus, protection, coronavirus


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 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.

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.

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.

Newsletter

Post-COVID Syndrome to ME/CFS

In 2020, OMF secured a $1 million grant to launch the first year of an international, multi-year study across the five OMF funded Collaborative Research Centers (CRC). The aim of this study is to examine Post-COVID Syndrome transitioning to ME/CFS. We are actively working to raise an additional $2 million for years two and three of the study. I am pleased to share with you an update on the first phase of this groundbreaking — and urgently needed — research project.

Read More »

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!

Stay Informed

Be the first to hear our research news.

Subscribe Now.

No thanks

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.

###

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