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

New publication on Severely Ill Patient Study by Team OMF

New research publication authored by Team OMF!

Breaking news! A new research publication authored by Dr. Ronald Davis, Dr. Wenzhong Xiao, OMF’s CEO & Founder, Linda Tannenbaum, and colleagues has been published in MDPI: “A Comprehensive Examination of Severely Ill ME/CFS Patients.”

Read it now.
This publication is open access, available for all to read.

 Wenzhong Xiao, PhD, and Ronald W. Davis, PhD, have provided the following summary of the new research publication:

From the desk of Ronald W. Davis, PhD, Chair of OMF Scientific Advisory Board,
and Wenzhong Xiao, PhD, Co-Director, Harvard ME/CFS Collaboration

In our first Scientific Advisory Board meeting back in 2016, we decided that the best way to begin OMF supported ME/CFS research is to comprehensively examine the clinical symptoms and the molecular features in the severely ill patients. This is because one in four patients with ME/CFS are severely affected and physically confined to their homes or beds.

The goal of this Severely Ill Patient Study (SIPS) is to better characterize these patients’ clinical conditions and discover the underlying biological abnormalities causing the symptoms. In this first publication, we reported the results of a comprehensive examination of the symptoms and clinical laboratory tests of the patients. The quality of life of the SIPS patients was negatively correlated with that of clinical depression.

The most troublesome symptoms included fatigue (85 percent), pain (65 percent), cognitive impairment (50 percent), orthostatic intolerance (45 percent), sleep disturbance (35 percent), post-exertional malaise (30 percent), and neurosensory disturbance (30 percent).

Sleep profiles and cognitive tests revealed distinctive impairments. Lower morning cortisol levels and alterations in its diurnal rhythm were observed in the patients, and antibody and antigen measurements showed no evidence for acute infections by common viral or bacterial pathogens.

These results highlight the urgent need to develop molecular diagnostic tests for ME/CFS. In addition, there was a striking similarity in symptoms between long COVID and ME/CFS. This underscores the value of research to understand the mechanisms of ME/CFS for efforts to treat and prevent long COVID and other debilitating post-viral conditions, which together affect millions in the United States alone.

The data is available to researchers here.

Donate to Open Medicine Foundation and help support groundbreaking research projects, such as the Severely Ill Patient Study (SIPS). Your donation of any amount supports critical research conducted across the OMF Collaborative Network.

 

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