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

Metabolic features of chronic fatigue syndrome by Robert Naviaux, MD, PhD, Stanford Collaboration

Comment by Ronald W. Davis, PhD

The publication, “Metabolic Features of Chronic Fatigue Syndrome” by Naviaux RK, et al. is a landmark in ME / CFS research. It is the most important and groundbreaking study of ME / CFS to date. Extending recent indications of metabolic alterations in ME / CFS, this study provides the first comprehensive, quantitative demonstration of the metabolomic deficiencies that characterize the disease. They define a clear metabolic ‘signature’ that accurately distinguishes patients from healthy individuals. This signature was consistent even among patients with different symptoms or disease-initiating events. These findings are exciting news for both patients and researchers.

RobertKNaviaux

Robert K. Naviaux, MD

Not only do they substantiate the biological reality of this stigmatized disease, but they also point to the most promising ME / CFS biomarker candidate the field has seen. An ME / CFS biomarker – long awaited by scientists – would allow the precise and objective diagnostics that have never been possible for this disease. In addition, it would accelerate the search for treatments. Dr. Naviaux’s study suggests that both of these endeavors could be designed in a way that will benefit all patients, regardless of their symptoms and initiating events (which are not always known).

In addition to a common metabolomic response, patients show a variety of individual responses. These individual responses may contribute to the symptomatic differences, and may be caused in part by genetic differences. Similarly, effectively treating ME / CFS might require two components: a common treatment for all patients and a personalized treatment. Interestingly, this might explain the plethora of treatments that have helped individual patients but only rarely work on other patients.

Another important finding from this study is that the metabolomic response observed in ME / CFS is opposite to the pattern seen in acute infection and metabolic syndrome. This result supports the controversial idea that while infection is often the initiating event for ME / CFS, it does not contribute to the ongoing illness. What is important to note is that in the absence of evidence of an active infection, it is plausible that the long-term antimicrobial treatments often used for ME / CFS patients are doing more harm than good.

This breakthrough study thus presents several new findings of great importance to the ME / CFS patient, medical, and research communities – and perhaps most importantly, to the search for treatments. For these findings to have an impact on patient care, further investigation and validation via independent studies are crucial. Because of this, the Open Medicine Foundation has funded the next study of a larger patient cohort, in which Dr. Naviaux will validate the ME / CFS metabolomic signature in a larger, geographically diverse sample, and I will explore the role of genetics in the individual responses. These studies are already underway. We appointed Dr. Naviaux to the Scientific Advisory Board of OMF earlier this year, and we are grateful for his expertise in helping to unravel the metabolic mysteries of this debilitating disease. We are finally on the right path to understanding ME / CFS. We and many of our collaborators are working hard to translate this new understanding into general and personalized treatments. The more support our research gets, the faster that will happen. Find out how you can support ME / CFS research here.

 

 

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