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

Study of Thrombospondin-1 (TSP1) in ME / CFS pathogenesis (STOP-ME)


We propose that elevation of circulating thrombospondin-1 (TSP-1), a multifunction protein, in the blood could reduce brain-blood flow in some persons suffering from ME / CFS leading to a brain fog and post-exertional malaise (PEM). Conversely, a rapid decrease in TSP-1 blood levels in some ME / CFS patients could induce a hypotension resulting in orthostatic intolerance or even POTS.


Vascular instabilities are part of a group of symptoms affecting several persons with ME / CFS. Current treatments to alleviate those symptoms are limited and often not very effective for ME / CFS. A more comprehension approach about the role of TSP-1 in ME / CFS pathophysiology could lead to pharmacological therapies that are more effective.


  • Application of a stress-test reveal a different physiological behavior of ME / CFS patients along three clusters (as defined initially with our diagnostic panel of circulating microRNAs).
  • Cluster 1 encompasses ME / CFS patients showing no significant changes in TSP-1 blood level after stimulation versus the baseline values.
  • Cluster 2 encompasses ME / CFS patients showing a drastic reduction in TSP-1 levels following the stress-test and regroups in our cohort all ME / CFS patients exhibiting an orthostatic intolerance with or without POTS.
  • Cluster 3 encompasses ME / CFS patients showing a strong elevation of TSP-1 blood levels after the application of the stress-test. This group is developing more often a brain fog and develops more a severe PEM.
  • Our preliminary experiments showed that exposition to TSP-1 proteins inhibits the signaling of membranous receptors, termed GPCR, when they are coupled to G inhibitory proteins (Gi). This discovery is important because it could explain neuroendocrine symptoms in ME / CFS patients having high circulating TSP-1 levels.
  • The identification of a receptor interacting with TSP-1 could allow us to propose a therapeutic approach to relieve, prevent or reduce “brain fog” and related symptoms in ME / CFS patients. Interestingly, α2δ-1 is the high affinity receptor for two commonly prescribed anti-epileptic, anti-neuropathic pain medications, gabapentin (NeurontinTM) and pregabalin (LyricaTM). Both drugs are being used off-label for ME / CFS and fibromyalgia patients, mostly for pain relief but some patients also report significant improvement of their “brain fog” and neurocognitive symptoms.
  • Search for the mechanisms causing the elevation of TSP-1 secretion and production in ME / CFS led us to explore a possible connection between the IDO2 metabolic trap given than inactivation of IDO2 by common mutations could increase tryptophan (Trp), an amino acid, at the cellular level. It is well known that such increase could lead to the elevation of proteins like TSP-1 due to their high content in Trp as a defense mechanism to prevent Trp accumulation, which could be toxic.
  • Among other possible mechanisms, leading to higher TSP-1 levels, we intend to investigate if hyperglycemia and glucose intolerance could lead to an increase in TSP-1 levels in some ME / CFS patients.
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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


Heather Ah San

Development and Communications Manager