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

Møt Laurel Crosby, PhD, medlem av SGTC-teamet

I denne ukens #OMFScienceWednesday har vi gleden av å introdusere dere for Laurel Crosby, PhD.  Hun var det første medlemmet av Stanford Genome Technology Center (SGTC) til å bli med Dr. Ron Davis i hans søken på å forstå det molekylære grunnlaget for ME / CFS. Laurel delte sin historie med OMF.

Laurel Crosby, PhD, member of the SGTC Team

“Mitt navn er Laurel Crosby, Ph.D, og jeg er Engineering Research Associate ved Stanford Genome Technology Center. Min bakgrunn er innen biologi, mikrobiell økologi, miljøteknikk og molekylær diagnostisk teknologiutvikling.

Jeg hjalp Ron Davis med å bygge laboratoriet-komponenten ved ME / CFS Research Center på Stanford, og min offisielle tittel er Director of Innovation. Jeg bruker haIvparten av tiden min med å tenke som en forsker, jeg leter etter ledetråder, holder utkikk etter ny teknologi og identifiserer måter som kan forbedre livskvaliteten for pasienter og familiene deres.

Jeg er fokusert på samspillet mellom genetikk and miljø, spesielt ernæring, mikrobiome og miljømessige eksponeringer. Min ingeniørbakgrunn gir meg muligheten til å se på helse som et nettverk av interaksjoner, og jeg fokuserer på metabolomikk og genetikk som en del av Multi-Omics komponenten I vårt forskningsprogram.

Jeg jobber for tiden med å utvikle strategier for å vurdere eksponering av tungmetaller, og mer nøyaktige måter å måle spormetaller i celler og vev.

Resten av tiden min bruker jeg på å være en “fikser.” Jeg passer på at ting blir gjort jevnt og sømløst, og jeg støtter resten av ME / CFS forskningsteamet ved SGTC.

For eksempel, når vi trengte prøver fra pasienter, skrev jeg IRB-protokollen (Independent Review Board) og oppretter flebotomi-tjenesten. Når jeg fant en ny og lovende teknologi, forhandlet jeg med selskaper om å gi utstyrsdemonstrasjoner og gunstige priser.

Akkurat nå jobber jeg med hvordan vi kan gi leger og pasienter tilgang til våre presisjonsmedisinske verktøy og tjenester. Jeg prøver alltid å finne måter der ting kan fungere og til å bli billigere.

I 2012 var Ron og jeg de eneste ved Stanford Genome Technology Center som interesserte oss for å forske på ME / CFS, og nå er vi et travelt senter med mer enn et dusin forskere, flere spennende prosjekter og mange samarbeidspartnere både innenlands og internasjonalt.”

Tusen takk Laurel, for ditt modige, langvarige og ubøyelige engasjement i vårt forsøk på å hjelpe pasientene tilbake til sine liv. #EndMECFS

Du kan også finne denne artikkelen på nettsiden vår: http://bit.ly/2vIAG7D

Takk til Anne-Marthe for denne oversettelsen.

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.

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 six 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