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

Med ME / kronisk utmattelsessyndrom

Du som er klar over hva ME / kronisk utmattelsessyndrom kan innebære, skjønner i likhet med oss at det haster med å forbedre den kliniske pleien for personer som er rammet av denne ødeleggende tilstanden.

OMF fokuserer på behandling, og har investert 150 000 dollar i studier av personer ME / CFS som viser såkalt «preload failure» under en invasiv kardiopulmonal belastningstest (iCPET). Jeg har bedt Open Medicine Foundations forskningskontakt Christopher W. Armstrong, PhD, forklare hvorfor vi er så begeistret for dette siste prosjektet:

– Jeg er takknemlig for å kunne presentere den kliniske utprøvingen av Mestinon for ME / kronisk utmattelsessyndrom, som er den første av to nye kliniske utprøvinger med fokus kun på behandlingsalternativer for personer med ME / kronisk utmattelsessyndrom.

Studien gjennomføres av dr. David Systrom ved Brigham & Women’s Hospital i forbindelse med Harvards samarbeidsprosjekt innen ME / kronisk utmattelsessyndrom ved Harvard-tilknyttede sykehus. Dr. Systrom har funnet at såkalt «preload failure» forekommer hos enkelte personer med ME / kronisk utmattelsessyndrom.

Hos disse pasientene antas «preload failure» å skyldes en ubalanse i det autonome nervesystemet, som fører til at hjertet fylles mindre under anstrengelse. Legemiddelutprøvingen vil teste responsen på Mestinon under belastning hos personer med ME / CFS og «preload failure».

Tidligere studier har vist en forbedring hos pasienter i den generelle befolkningen med «preload failure» etter behandling med Mestinon. Dr. Systrom planlegger å evaluere korttidseffektene av Mestinon på det autonome nervesystemet og den nevrovaskulære kontrollen hos personer med ME / kronisk utmattelsessyndrom og «preload failure».

Studier av disse fenomenene vil gi dypere forståelse av ME / kronisk utmattelsessyndrom, og denne utprøvingen kan føre til nye og spesifikke behandlingsalternativer for personer med ME / kronisk utmattelsessyndrom.

Dette er bare første fase av denne forskningen. Det gjenstår mye arbeid før vi kan tilby behandlinger for ME / kronisk utmattelsessyndrom og andre kroniske komplekse sykdommer. OMF jobber for å sikre bedre finansiering til vårt forskningsfelt ved å bringe sammen engasjerte mennesker og dyktige, engasjerte forskere over hele kloden for å sikre at arbeidet for å finne en kur fortsetter.

Vil du investere i denne viktige forskningen nå, og bli fast giver til OMF under #MayMomentum? Faste givere har funnet den perfekte måten å investere i vitenskapelig forskning på.

Ditt faste månedsbidrag vil uansett beløp hjelpe oss å opprettholde fremdriften i laboratoriet gjennom løpende finansiering. Vi ber deg overveie å investere i dag i den viktige forskningen som foregår ved våre fire OMF-etablerte samarbeidsbaserte forskningssentre.

Takk, og ha det bra

 

 

 

 

Linda Tannenbaum
Open Medicine Foundation

 

Det er givertirsdag! Gi til #MayMomentum og vis verden at kampen mot ME / kronisk utmattelsessyndrom er noe alle burde være opptatt av!

Bli fast giver nå

Gi et engangsbeløp til #MayMomentum i dag!

Les mer på #MayMomentum .

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Les mer her: #MayMomentum Facebook

 


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