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

Heart Preload Failure

STUDY HYPOTHESIS AND DESCRIPTION

Invasive Cardiopulmonary Exercise Testing (iCPET) on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) patients shows a characteristic pattern of “preload failure” (PLF) that could be associated with postural orthostatic tachycardia syndrome (POTS) and/or post-exertion malaise (PEM).

The PLF comes in 2 forms, a high flow and a low flow. The low flow form may be caused by a failure to reduce venous compliance with exercise or a pre-existing reduced overall blood volume. However, the latter is less likely because the PLF persists even when one liter of saline is given to increase the blood volume just prior to the iCPET study.  On the other hand, the high flow PLF may be caused by peripheral arterial-venous shunt effects or deficient oxygen delivery or utilization. A final explanation is that blood travels through the peripheral capillary system normally but cellular oxygen uptake and/or utilization by the mitochondria is deficient.

STUDY DESIGN

ME / CFS patients impaired with PLF, as diagnosed by a single iCPET or by sequential iCPET, will be further evaluated.  This evaluation will measure large vessel vascular capacitance and blood volume, additional diagnostic testing (i.e., screening for adrenal insufficiency, tilt-table testing, nerve conduction studies) and the presence of peripheral shunting and oxygen delivery. Therapeutic intervention (i.e., hydration, increased sodium intake, β-adrenergic receptor antagonists, fludrocortisone, pyridostigmine, and/or midodrine), compression stockings, and monitored exercise training will also be employed based upon individual patient findings.

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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