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

#MayMomentum er her!

I dag lanserer Open Medicine Foundation sin tredje årlige May Momentum-kampanje. Under denne kampanjen samler vi inn penger i solidaritet med den internasjonale ME / CFS-dagen den 12. mai, som setter søkelyset på de mange millionene som lever med ME / CFS og relaterte kroniske komplekse sykdommer.

Vi arbeider for at ME / CFS-pasienter skal slippe de grusomme båndene som denne sykdommen fører med seg, og skjerme de mange millionene som en gang kan få sykdommen. Årets May Momentum-kampanje finner sted i koronaens tid. Det gjør at vi alle utfordres til ikke å miste fokus, holde motet oppe og framfor alt bevare håpet.

Og vi har grunn til å være håpefulle. Høre bare hva dr. Ron Davis, direktør for Open Medicine Foundations vitenskapelige rådgivende organ, har å si:

«Gjennom hele mai vil vi vise tre nye prosjekter som er valgt ut fordi de virkelig utgjør en forskjell for ME / CFS-pasienter. OMF finansierer to nye pilotbehandlingsstudier, Mestinon og Kynurenine, og en studie for å spore intensivpasienter med covid-19, med den forventning at noen kan utvikle ME / CFS. 

Vi trenger din støtte i 2020 for å skalere opp arbeidet og sette ytterligere fart i forskningen som blir gjennomført ved våre fire samarbeidsbaserte forskningssentre.»

Siden 2012 har EBF samlet inn over 24 millioner dollar til ME / CFS-forskning fra både store og små private bidrag. Det gjør oss til verdens største private sponsor av ME / CFS-forskning. Like fullt er dette en dråpe i havet når det gjelder medisinsk forskning.

Vi har en lang vei å gå før vi har fått inn tilstrekkelige midler og kan skalere opp forskningen. Det krever visjonære personer – som de briljante menneskene som leder de samarbeidsbaserte forskningssentrene, de fremragende medlemmene av vårt vitenskapelige rådgivende organ og betydelige og faste bidrag fra støttespillere som deg – for å gjennomføre en så bred og dyptpløyende forskning som er nødvendig for å finne behandlinger og en kur.

Det er mange måter å hjelpe på, og vi har gjort det enkelt for deg å gi og bli en av de mange tusen over hele kloden som utgjør Team OMF. Utfordringene er virkelige, men vi mister ikke motet. Ikke med deg på laget.

Med håp for alle

 

 

 

 

Linda Tannenbaum
grunnlegger og president

PS: Jeg har en spesiell anmodning under #MayMomentum-kampanjen: Hvis du ikke allerede har gjort det, vil vi gjerne at du vurderer å bli fast giver. Månedsbidraget ditt vil ha en unik effekt, fordi det sørger for en pålitelig finansieringskilde for forskerne våre.

Klikk her for å gi ditt månedlige bidrag nå.

#MayMomentum

 

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