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

An Update on the Mestinon Clinical Trial

From the desk of Ronald G. Tompkins, MD, ScD
Co-Director, The Harvard ME / CFS Collaboration

Mestinon Trial Update 

In May, 2020, Open Medicine Foundation (OMF) announced the Mestinon Clinical Trial for ME / CFS, conducted at the Brigham & Women’s Hospital by Dr. David Systrom in association with the Harvard ME / CFS Collaboration at the Harvard Affiliated Hospitals.

Background

This study was started after Dr. Systrom observed that some people with ME / CFS have what is known as Preload Failure (PLF).

In this instance, Preload Failure is thought to come from an imbalance in the autonomic nervous system and results in reduced filling of the heart during exertion, and could be associated with postural orthostatic tachycardia syndrome (POTS) and/or post-exertion malaise (PEM).

Prior studies have shown symptomatic improvement in the general population with PLF after treatment with Mestinon.

Update

Dr. Systrom and his research team are now conducting a clinical trial on the therapeutic effects of Mestinon: “The Exercise Response to Pharmacologic Cholinergic Stimulation in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.”

To understand the effects of Mestinon, Dr. Systrom utilizes an invasive cardiopulmonary exercise test (iCPET), which measures the blood flow, vascular pressures, and ventilation and gas exchange in the lungs and skeletal muscles during exercise.

In this study, patients perform an iCPET, and take either a 60 mg tablet of Mestinon or placebo, and perform a second iCPET assessment 50 minutes later to assess for any improvement of various exercise parameters.

By investigating the link between the autonomic nervous system and the dynamics of blood flow in people with ME / CFS, we are hopeful that this will lead to new targeted treatments and a deeper understanding of ME / CFS.

 


 

If you are able, please consider contributing to our effort to
uncover research-based answers.

Help us improve the quality of life for all sufferers of ME / CFS and other
chronic complex diseases, such as Post Treatment Lyme Disease Syndrome
and Fibromyalgia.

 

*Disclaimer*

Each CRC arranges its protocols to gather samples, conduct research,
and seek participants if needed. CRCs do not typically solicit participation
or respond to inquiries from the general public.

OMF is not directly involved in the participant selection process; our role is to ensure
that each CRC has the financial resources required to conduct its research.
Thank you for your interest!

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