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

OMF Announces New “Brain Fog” Study

Inside the lab at the Collaborative Research Center at Uppsala University, Sweden

About the Study

Open Medicine Foundation (OMF) is excited to announce a new collaborative study between the ME / CFS Collaborative Research Center at Uppsala, Sweden and the Harvard ME / CFS Collaboration.

This study focuses on biomarkers for long-term neurocognitive outcomes. It provides an excellent opportunity to understand the mechanism of long-lasting viral-induced cognitive complications, commonly referred to as “brain fog.” Brain fog is one of the significant symptoms of those suffering from Myalgic Encephalomyelitis/chronic fatigue syndrome (ME / CFS) and is also seen in patients with herpes simplex encephalitis (HSE).

Objectives:

Investigate the correlation between biomarkers for brain inflammation and long-term neurocognitive outcomes in patients with herpes simplex encephalitis (HSE).

Method:

Fifty patients with Herpes Simplex Encephalitis (HSE) had blood and cerebrospinal fluid (CSF) sampled at three separate intervals – while in ICU, two weeks later and three months later. During these three months, all 50 patients appear to suffer from post-viral fatigue syndrome (PVFS), and many are expected to qualify for ME / CFS diagnosis at six months.

Markers of neuroinflammation will be measured in the CSF, while markers of altered metabolism will be identified in the blood. These markers will be correlated to symptom expression. A panel of markers from each time point will be used to biologically distinguish those that develop ME / CFS from those that do not.

Conclusions:

Our findings could give predictive evidence of long term neurocognitive outcomes in HSE and suggest a causative chain of events where brain tissue damage increases the risk of subsequent prolongation of CSF inflammation and post-viral fatigue. The data could guide a future intervention study of immunosuppressive therapy administered in the recovery phase of HSE and other viral infections with neurological sequelae.

This study reveals why OMF uses the word “Collaborative” to describe the research that we fund! Our guiding philosophy is that a collaborative approach accelerates research.

In the words of OMF founder and CEO Linda Tannenbaum:

“We are delighted to fund this important project, which allows for collaboration between the Uppsala and Harvard Collaborative Research Centers.

We want to thank our OMF family, whose support and advocacy make our research possible.”

 


OMF is a Proud Sponsor of the
IACFS/ME 2020 Virtual Conference 

The International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) has announced its first virtual research conference to be held on August 21, 2020 at 10am EDT.

The conference will focus on biomedical, public health, and behavioral aspects of ME / CFS and associated comorbidities. OMF’s Chief Medical Officer, Dr. Ronald Tompkins, will be speaking on the conversion of COVID-19 patients to people with ME / CFS.

A portion of the meeting will also be devoted to COVID-19 and its relevance to ME / CFS research and clinical care.

 View the full conference schedule

 Learn more or register today

If you are able, please consider contributing to our effort to uncover research-based answers.

Help us improve the quality of life for all sufferers of ME / CFS and other chronic complex diseases, such as Post Treatment Lyme Disease Syndrome and Fibromyalgia.

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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