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

En melding fra Whitney Dafoe

Vi er glade for å kunne dele et utdrag av
en melding fra Whitney Dafoe…

“Jeg heter Whitney Dafoe og har alvorlig ME / kronisk utmattelsessyndrom. Jeg har hatt symptomer i 15 år, men har blitt dårligere på grunn av mangelen på behandlinger som gir resultater.

Jeg kan bare kommunisere hvis jeg tar et legemiddel som heter Ativan, som midlertidig lindrer noe av følsomheten min overfor andre. Det tar flere timer å skrive disse innleggene, og det gjør meg verre, men jeg gjør det likevel fordi de fleste med alvorlig ME / kronisk utmattelsessyndrom bare forsvinner til et mørkt rom der man ikke hører fra dem, og noen må fortelle historien vår. Vi finnes.

ME / kronisk utmattelsessyndrom er en ekstremt ødeleggende sykdom som tærer på deg til det ikke er noe igjen. Jeg har mistet vennene mine, karrieren min, hobbyene mine, alt som har betydd noe i livet mitt og følelsen av å være menneske.

Akkurat nå har en viruspandemi spredt seg over hele verden.

Alle som leser dette, bør være bekymret, ikke bare for å bli smittet og overleve pandemien, men for hva som kan skje med livet deres selv om de blir smittet og overlever. For virussykdom er en av de kjente triggerne for ME / kronisk utmattelsessyndrom. Svært mange pasienter med ME / kronisk utmattelsessyndrom har hatt kyssesyke og aldri kommet seg helt igjen. I stedet har de endt opp med ME / kronisk utmattelsessyndrom.

Ting har begynt å endre seg takket være en gruppe anerkjente forskere fra hele verden, inkludert mange nobelprisvinnere, som har bestemt seg for å ta tak i sykdommen. De ledes av Ronald Davis, en av verdens mest betydelige vitenskapelige tenkere, som jobber i Open Medicine Foundation og er fast bestemt på å ta knekken på ME / kronisk utmattelsessyndrom.

Akkurat nå har OMF finansiert en ambisiøs studie med blod fra pasienter med koronavirus, og de overvåker fremdriften slik at de kan se overgangen fra koronavirus til ME / kronisk utmattelsessyndrom i sanntid og samle inn store mengder medisinske data. Dette kan være et vendepunkt for å finne ut hvordan ME / kronisk utmattelsessyndrom utløses, og hvordan det kan stoppes før det starter.

Alle bør bli skremt av risikoen for å få ME / kronisk utmattelsessyndrom. Ingen som blir smittet av koronaviruset, er trygg. Men du kan gjøre noe som hjelper i tilfelle du får det. Gi en donasjon til OMF i dag.

 Les hele innholdet i Whitneys innlegg

Dette storslagne bildet, “Tiny Rainbows «, ble tatt av Whitney Dafoe
før han fikk ME / kronisk utmattelsessyndrom. Besøk nettsidene hans for å se mer av arbeidet hans:
http://www.whitneydafoe.com/

 


 

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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®

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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