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

#MayMomentum: Giada

Mi chiamo Giada Da Ros, sono la presidente della CFS/ME Associazione Italiana ovd, oltre che una paziente, e sono parte della neonata EMEC (Coalizione Europea per la ME). Sono una volontaria della OMF e lo scorso settembre ho donato il sangue per la ricerca alla Clinica di Stanford (vedi foto). 

Prima di star male conducevo una vita normale da studente universitaria di giurisprudenza. Quando mi sono ammalata, quasi 30 anni fa, riuscivo a malapena ad alzarmi dal letto. Ci sono stati momenti in cui ho avuto bisogno di essere imboccata e accompagnata in bagno. Mi ci sono voluti 12 anni prima di poter guardare un film in una sola seduta. Miglioro costantemente, ma anche ora la mia vita è tutt’altro che normale. Mi riposo tutta la mattina e faccio attività leggere per il resto della giornata. Ora posso uscire, e anche guidare un po’, per diversi giorni di fila, se non esagero. Altrimenti la pago, come sempre. Tutt’ora, più di 2-3 ore al computer garantiscono un crollo. Se vado a fare la spesa o socializzo, il giorno dopo non posso fare molto. 

Non sono in salute da così tanto tempo che è persino difficile immaginare cosa potrei fare se lo fossi. So solo che sono affamata di esperienze che mi sono state negate. E non vedo l’ora.

Quest’anno sono successe molte cose che mi hanno fatto sentire che stiamo prendendo lo slancio per mettere fine alla ME / CFS: il simposio di comunità della OMF al quale ho assistito, leggere una bozza di risoluzione dell’UE per destinare fondi alla ricerca sulla ME / CFS, vedere l’incrollabile impegno della OMF nella ricerca anche nel bel mezzo di un blocco senza precedenti.

Mettiamo fine alla MECFS insieme (#endMECFS). Per saperne di più, visitate il sito www.omf.ngo/MayMomentum.

 

 

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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 five 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