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

SGTC Research Conference Includes Focus On ME / CFS

På den här  #OMFScienceWednesday delar vi de viktigaste punkterna från veckans Stanford Genome Technology Center:s forskningskonferens, ett årligt event där Ron Davis’s team samlas för att dela sina resultat och diskutera framtiden för sin forskning. En hel session ägnades åt ME / CFS-forskning, med ytterligare sessioner på SGTC:s  basarbete inom syntetisk biologi, genomiska förhållningssätt till sjukdom och diagnostiska tekniker.

Under sessionen på ME / CFS presenterades uppdateringar på ’the Severely Ill Patient Study’ (studien på allvarligt sjuka patienter), som bekostades av OMF. Wenzhong Xiao visade att: 1) SF-36-värdena är sämre i ME / CFS än många andra stora sjukdomar och korrelerar minst med depression and mentala sjukdomar; 2) 21 cytokiner är olika hos ME / CFS patienter och kontroller; 3) 27 kliniska tester är olika hos patienter och kontroller, inklusive lågt morgonkortisol hos patienterna; 4) 63 metaboliter skiljer sig mellan patienter och kontroller; och ME / CFS har stora likheter med systemiskt inflammationsresponssyndrom (SIRS-övers. anm.).

Detta är en omfattande datamängd som erbjuder många fler tillfällen till analyser. Ett antal idéer diskuterades vid konferensens gruppsessioner och inkluderade hur man skulle kunna tillämpa matematisk modellering, genetisk analys, jämförelser med andra sjukdomar och mera. Hela datamängden öppnas upp för andra forskare för att påskynda dessa ansträngningar! Här kan ni kolla hela listan av tester som gjordes i den här studien: /phase-i-list-of-tests/

Laurel Crosby framhöll hur långt forskningen om ME / CFS vid SGTC har kommit tack vare stödet från OMF: från bara en patient och inga medel för några år sedan till dussintals patienter, ett flertal nya datamängder, ett rikt nätverk av samarbetspartners och medel för både personal och experiment. Alla i teamet är så tacksamma för det här stödet och de vetenskapliga möjligheter det erbjuder!

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