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

Un Mensaje de Whitney Dafoe

Nos complace compartir un extracto de
un mensaje de Whitney Dafoe…

«Me llamo Whitney Dafoe y tengo un SFC/EM severo. He tenido síntomas durante 15 años, pero he empeorado lentamente debido a la falta de tratamientos beneficiosos.

Solo puedo comunicarme tomando un fármaco llamado Ativan que alivia temporalmente parte de mi sensibilidad al contacto con los demás. Tardo horas en realizar estas publicaciones y me hacen empeorar, pero hago todo lo posible, porque la mayoría de las personas con SFC/EM severo simplemente desaparecen en cuartos oscuros para no volver a ser vistos ni escuchados, y alguien tiene que contar nuestra historia. Existimos.

El SFC/EM es una enfermedad extremadamente devastadora que te va consumiendo hasta que solo quedan carne y huesos. He perdido a mis amigos, mi carrera, mis aficiones; todo lo que daba sentido a mi vida y a mi humanidad.

Ahora se ha extendido una pandemia por todo el mundo.

Todos los que lean esto deben estar preocupados no solo por contagiarse o sobrevivir a esta pandemia, sino también por lo que podría suceder con su vida si se contagian y sobreviven. Porque uno de los desencadenantes conocidos del SFC/EM es una enfermedad vírica. Una gran población de pacientes con SFC/EM contrajo el virus Mono y nunca se recuperó por completo, sino que acabó desarrollando el SFC/EM.

Las cosas han empezado a cambiar gracias a un grupo internacional de prestigiosos científicos, entre ellos muchos premios Nobel, que decidieron investigar sobre la enfermedad. Dirigidos por una de las mentes científicas más brillantes del mundo, Ronald Davis, y trabajando desde la Open Medicine Foundation, están decididos a acabar con el SFC/EM (#EndMECFS).

En la actualidad, la OMF ha financiado un ambicioso estudio que toma muestras de sangre de los pacientes con coronavirus y supervisa su progreso para poder ver, en tiempo real, la transición del coronavirus hacia el SFC/EM y recopilar una gran cantidad de datos médicos. Este podría ser un punto de inflexión para averiguar cómo se desencadena el SFC/EM y cómo detenerlo antes de que comience.

Todo el mundo debe estar aterrado ante la perspectiva de padecer el SFC/EM. Nadie que se contagie con el coronavirus está seguro. Pero puede hacer algo para ayudar si se ha contagiado. Realiza una donación a la OMF hoy mismo.

 Leer el contenido completo de la publicación de Whitney

Esta fotografía con barrido, “Tiny Rainbows», fue realizada por Whitney Dafoe
antes del inicio del SFC/EM. Visita su sitio web para ver más trabajos suyos: 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