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

OMF funds new treatment-focused project

#TripleGivingTuesday Research Update:

OMF Funds New Treatment-Focused Project

From the desk of Ronald Tompkins, MD, ScD
Chief Medical Officer, Open Medicine Foundation

About the Project

As we reach the midway point of #TripleGivingTuesday, I’m thrilled to share with you the details of promising research at the Harvard ME/CFS Collaboration intended to open up an unprecedented treatment option to alleviate brain fog. 

“Brain fog” often makes an affected individual’s life miserable and extremely challenging. To find interventions to reduce brain fog, identify neuroinflammation, and find out where specifically in the brain these problems begin, it’s necessary to employ brain imaging of the highest quality.

In collaboration with Massachusetts General Hospital (MGH), our team at the Harvard Collaboration will use advanced neuroscience facilities at MGH for brain imaging of people with ME/CFS. Researchers expect to see microglial activation, or neuroinflammation, in those brain images. 

Additionally, a separate and distinct MGH study into microglial activation and treatment options for brain impairment will soon be released, resulting in a new treatment option for research and commercial use.

Those results add to our understanding of Brain Fog and, combined with the OMF-funded neuroinflammation study described above, open the door to potential treatment for people with ME/CFS.  If microglial activation is identified in the brains of people with ME/CFS, Harvard researchers would have a compelling and unprecedented “compassionate use” argument to launch a drug trial of medications used to treat other types of brain impairment.

Inflammation in the central nervous system (CNS) could significantly contribute to many neurological symptoms in ME/CFS, including non-restorative sleep, cognitive impairment, circadian rhythm disturbances, and sensory sensitivities. 

Strong evidence that would associate CNS inflammation with a collection of neurological symptoms would significantly facilitate our current understanding of ME/CFS neuropathology. This new knowledge would be particularly timely because the role of CNS inflammation has increasingly become recognized as critical in multiple other multi-system neurological diseases such as Alzheimer’s Disease, Amyotrophic Lateral Sclerosis, Fibromyalgia, and Gulf War Illness. The focus to develop therapeutics for these neurological diseases will likely benefit people with ME/CFS.  

Cognitive impairment or “brain fog” is one of the primary symptoms of these diseases. ME/CFS often displays these neurological symptoms within the context of a chronic, low-grade, systemic inflammation that appears to involve the CNS. 

We intend to evaluate ME/CFS patients and healthy subjects to determine the presence of neuroinflammation. We will design a data collection protocol along with forms for clinical demographics, clinical test results, clinical data, imaging data, clinical outcomes, and biological data. These materials will be essential to prepare for a clinical research study and eventual treatment trial. 

*While OMF funds research projects at our six established Collaborative Research Centers, we are not typically involved in the research process and cannot introduce constituents to researchers. CRCs are not able to respond to inquiries from the general public. When OMF seeks participants in any data gathering research project, we will email those requests to our entire community. *

Now is the time to support these historic research efforts. When you donate to OMF between now and November 30, your gift will be TRIPLE matched!

Support research today!

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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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 six 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