From the desk of Ronald Tompkins, MD, ScD
Co-Director, Harvard ME/CFS Collaboration
Preliminary data analysis shows significantly higher levels of cytokines in patients post-exercise compared to healthy controls
It’s day four of our #MayMomentum campaign and we are so appreciative of your efforts to raise awareness of and money for ME/CFS research! It’s only with your support that we can continue to push for answers by funding open, collaborative research efforts.
On behalf of Open Medicine Foundation (OMF), I’m excited to share an update from my colleague Dr. David Systrom and his colleagues at the Brigham and Women’s Hospital from a study using samples collected from people with ME/CFS using Invasive Cardiopulmonary Exercise Testing, or ICPET.
You might recall from past articles, we’ve referenced a phenomenon called “preload heart failure.”
Simply put, preload failure (PLF) is when a patient during exercise exhibits impaired blood return to the heart. A significant subset of people with ME/CFS who were tested using ICPET experience PLF at maximum exercise. Aspects of this PLF are highly consistent with mechanisms that result in postural orthostatic tachycardia syndrome (POTS) and post-exertional malaise (PEM), both of which are common symptoms in people with ME/CFS.
Investigators of Harvard’s ME/CFS Collaboration are evaluating participant’s blood samples extracted at three separate time-points during cardiopulmonary exercise testing: before, at peak, and one-hour after exercise. The goal is to identify abnormalities when blood is pumped from the heart and when it’s returned to the heart through computational analyses of the “multi-omics” data. In this case, researchers will analyze plasma samples through cytokines, metabolomics, and proteomics.
In the preliminary analysis of the cytokine data of the iCPET samples, we identified that exercise induced significantly higher levels of multiple cytokines in ME/CFS patients compared to the healthy controls. These results will be further investigated in the metabolomics and proteomics data.
In addition, muscle biopsies will be taken from the participants after the exercise. As controls, biopsies of bedrest volunteers have been analyzed.
Researchers will also conduct metabolic modeling to understand the metabolic dysfunction, which plays a pivotal role in ME/CFS. We are currently modeling the metabolic impact of long-term bed rest in young and older individuals. We will apply the same approach to studying the data of the iCPET study participants.
What does this mean for people with ME/CFS?
There is a strong likelihood that using proteomic and metabolic analysis, critical clues to what causes fatigue and inability to exercise may be identified in the blood of people with ME/CFS using an iCPET. We hope that as we receive further results, researchers will gain a better understanding of the underlying biology behind ME/CFS and PLF and be able to identify new drug targets and therapies for patients.
Now is a critical moment in our mission. In recognition of May ME/CFS Awareness month, OMF is leading the #MayMomentum campaign to increase awareness of ME/CFS and raise funds to advance urgently needed biomedical research.
Help us spearhead research efforts to find treatments and a cure for ME/CFS! With you on our team, we all have a reason to be hopeful!
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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.
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 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 six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.
Heather Ah San
Development and Communications Manager