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

Deep Dive Into The Science On ME

By Adrianne Tillman

Leading scientists presented their research on ME / CFS at the day-long Community Symposium on the Molecular Basis of ME / CFS* at Stanford on Aug. 12. The researchers spoke at length about the complicated biological processes involved, their study results and the limitations of their conclusions presented thus far.

The amount of science on ME / CFS presented was overwhelming, and the article below highlights only a few of the studies discussed.

*ME / CFS was the terminology used at the conference.

The Mighty Mitochondria

The miraculous mitochondria was the headliner at the Community Symposium on the Molecular Basis of ME / CFS, which was recorded via livestream. Each researcher attempted to break it down for the layperson but the take-away was clear: something is going on with the mitochondria of people with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) or ME / CFS.

Bob Naviaux, MD, PhD from the University of California, San Diego (UCSD) took the first stab at explaining the mitochondria as it relates to the “healing cycle” and the Cell Danger Response.

The mitochondria has two roles: energy production and cell defense, Naviaux explained.

“The mitochondria coordinates our cellular defense system. Think of them as concert masters. When they encounter danger, they send out danger signals that cause the cell to change its function from daily housekeeping functions to defending itself.”

Under normal circumstances, the mitochondria is able to return a person back to health from all of the traumas that our ancestors have encountered. The mitochondria can even recover from stresses it hasn’t encountered, such as new diseases, because its pathway to healing is different from its pathway to disease.

However, there appears to be a roadblock in the healing cycle for ME / CFS. Naviaux and his team are attempting to figure out how to remove that roadblock.

Naviaux explained that there are three sequential steps to the healing cycle but if one of those steps gets blocked, the healing cycle cannot take place. One of those steps is amenable to a particular class of drugs called Antipurinergic Therapy (APT), which includes Suramin. Naviaux’s team intends to investigate Suramin as a  treatment for ME / CFS.

Watch Naviaux’s talk, starting at minute 24.

Keep an eye on Suramin

Suramin appears to have potential for treating ME / CFS but getting it to clinical trials is going to be a challenge since there is no financial incentive for a pharmaceutical company to invest in Suramin for ME / CFS, according to Naviaux.

The drug is 100-year-old, so it is free of patents. Bayer gives Suramin to the World Health Organization for free to treat African Sleeping Sickness, which costs $27 per child per year to treat, whereas it takes approximately $20 million to bring a drug to phase 3 clinical trial over a 5-year period, explained Naviaux. Also, Bayer is primarily interested in developing cardiovascular drugs, and is not interested in expanding its reach to pharmaceuticals for ME / CFS or autism, according to Naviaux.

However, Naviaux said that there is another pharmaceutical company interested in manufacturing its own Suramin, but that it will take one-an-a-half-years for the drug to be ready.

Meanwhile, in the last couple of years, it has been shown that Suramin inhibits Zika and Ebola viruses in cells and culture, so there may be an infectious disease application for Suramin in the future. A manufacturing plant is being built to develop Suramin for such purposes.

Listen to the Suramin discussion, starting at 3 hrs 20 mins.

A Taste of the Science  
Some of the studies mentioned during the conference:
  • The Montoya Study showed that there is systemic inflammation present in the participants with ME / CFS with an progressive increase of inflammation from the mild to severe patients.

“The study involved 192 ME / CFS patients and 392 healthy controls matched for age and sex. Out of 51 cytokines investigated via sophisticated fluorescence-based testing, only two of the cytokines differed, in their total concentrations, between the ME / CFS and control groups,” explained a summary of the study according to an NPR article.

“But, levels of 17 of the cytokines varied dramatically between the patients with mild versus severe ME / CFS symptoms. Of those 17 cytokines, 13 were types that promote inflammation. This is significant because symptoms in these patients and findings from other studies also suggest that chronic inflammation plays a major role in the illness.”

  • On the Spectrum: Autism and ME / CFS 

Bob Naviaux, MD, PhD and the members of his research team at UCSD have conducted studies on diseases such as ME / CFS, autism, Gulf War Syndrome, PTSD, traumatic brain injury and depression. Naviaux believes that the research shows that there are shared pathways among all of these diseases regarding the Cell Danger Response.

“Each disease is a little different but there is an underlying unity that is shared with ME / CFS – the other diseases inform us about that underlying unity,” Naviaux said.

Read more about the research that Naviaux is undertaking in partnership with the Open Medicine Foundation, including the 2016 Metabolomics and Genetics Study from 2016 and the follow-up 2017 Validation Study.

  • Studies show that there is reduced diversity in the gut microbiome between people with ME / CFS and healthy controls. Patients have often asked whether or not they should get a fecal transplant, but there is not enough data to give a definitive answer, explained Maureen Hanson, PhD, at Cornell University.

Norway will undertake a study later this year to investigate whether fecal transplants can help people with ME. The randomized control trial will study 74 ME / CFS patients, and is being led by Peter Holger Johnsen from Harstad, Norway.

Watch the talk by Dr. Hanson starting at 1 hr 53 mins.

  • Hanson has collaborated on another study showing disturbances in the fatty acid and lipid metabolism affecting three pathways: fat metabolism; energy and sugar metabolism; and amino acid and purine metabolism. The same study shows that plasma glucose is lower in people with ME.Learn more about this study by listening to Dr. Hanson’s talk at 1 hr 58 minutes.

  • Preliminary studies found that nearly all of the ME participants had mutations in their mitochondrial genes not seen in healthy controls, according to a study done by Alan Light, PhD, University of Utah. (The study involved looked at the genes of 40 patients with ME / CFS and/or Fibromyalgia. There were 31 controls.)

Not all of the ME patients in the study shared mutations in the same mitochondrial genes, however, suggesting that there are different subgroups of people with ME / CFS.

Within the study, 12 percent of the ME patients had a significant mutation in the heat-shock gene HSPA6.

Watch Dr. Light’s presentation on gene variants, mitochondria and autoimmunity in people with ME, beginning at 2 hours, 28 mins.

  • Sweden is measuring the cerebrospinal fluid in patients using a Nuclear Magnetic Resonance (NMR) machine. Samples from the cerebrospinal fluid can show what’s happening in the central nervous system more clearly.

Watch the talk by Jonas Bergquist, MD, PhD, Uppsala University, starting at 59 mins.

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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.


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 five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.


Heather Ah San

Development and Communications Manager