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

Collaborative Research Center at Stanford aims to produce blood-based diagnostic technology for ME / CFS

Trevlig #OMFScienceWednesday! Idag ska vi prata om varför the Collaborative Research Center vid Stanford, som vi finansierar, siktar på att ta fram en blodbaserad diagnostisk teknik för ME / CFS. Här är tre viktiga anledningar:

  • Billigare och snabbare. Alla som vet något om ME / CFS känner till hur svårt, tidsödande och dyrt det är för patienter att få en diagnos. Detta beror till stor del på att standarddiagnosen är mer subjektiv (symtombaserad) än biologisk. Eftersom blodet cirkulerar genom kroppen så förändras innehållet av vårt hälsotillstånd. Blod är det minst inkräktande sättet att få en glimt av våra individuella biologiska skillnader, och det är anledningen till att det används för att diagnosticera så många sjukdomar. Flera tekniker, som dr Ron Davis’ team vid Stanford University utvecklat, kan utföra procedurer för att utmärka patienters blodprov billigt och snabbt. Ett exempel:

https://med.stanford.edu/news/all-news/2017/02/scientists-develop-lab-on-a-chip-that-costs-1-cent-to-make.html

2)    Medger kontroll. Precis som diabetiker använder ett självtest för att sticka sig i fingret hemma för att kontrollera sina glukosnivåer dag för dag så skulle på sikt en bloddiagnostik möjliggöra för ME / CFS-patienter att kontrollera i vilket tillstånd deras sjukdom befinner sig, bl a reaktionerna på behandlingar, ändringar i dieten eller stressorer.

3)    Visar på nya mediciner. Ett prov som kan skilja friskt blod från ME / CFS-blod kan också användas till att identifiera mediciner som kan hjälpa ME / CFS-blod att agera mer som friskt blod. The Collaborative Research Center vid Stanford tillämpar tekniker för att screena många olika mediciner på patienters blod, vilket kan leda till nya mediciner som kan bli effektiva för patienterna.

OMF tackar Siv Pierson för översättningen.

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