Author: #MEAction

OMF Severely Ill Patient Study Raises $1 Million

The Open Medicine Foundation’s (OMF) Severely Ill Patient Big Data study is now fully funded with $1 million in private research funding thanks to a groundswell of crowdfunding efforts and several generous donations by anonymous donors!
Very little research has been done in the bedbound patients “Hopefully, the more severely ill will have a stronger signal of what’s going wrong.”

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Kickstart for Lipkin and Hornig's BIG Microbiome Study

A larger, stronger, even more robust microbial diversity and immunity study is starting at Columbia Center for Infection & Immunity (CII) for ME/CFS! The great news is – very recently Columbia CII received an NIH grant to investigate microbial diversity and immunity in ME/CFS. However, it’s not all great news for Columbia’s big microbiome study.

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Contractor: Help CDC Develop ME/CFS Materials from IOM Report

CDC – Collaboration to Develop ME/CFS Educational Materials Based on IOM Report The CDC is requesting quotes from business of all sizes to assist them in the development of ME/CFS educational materials based on the IOM reports. Specifically, they are looking for contractors to assist with professional, administrative, and management support services. From FedBizOpps.com: The

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Ron Davis on why his NIH proposal was rejected

Ron Davis and Janet Dafoe had to watch as their son Whitney Dafoe deteriorated from an active, world-traveling photographer to bed-bound and at the edge of starvation due to ME/CFS. Davis has built a world-class research team to study ME/CFS, including co-investigators from top institutions including Harvard and Stanford. Despite his team’s track record and expertise, their

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NIH awards $766K to Lipkin and Hornig

The US National Institutes of Health (NIH) has awarded a total of $1.3 million for ME research to three teams led by Drs. Ian Lipkin and Mady Hornig, Nancy Klimas and Maureen Hanson, respectively. In an unexpected move, the NIH gave $766,000 to Drs. Ian Lipkin and Mady Hornig and their team at the Center

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NIH: ME/CFS research applications are low quality

When we started working on the 21st Century Cures Act lobbying campaign we quickly learned that NIH officials are continuing to tell people that no one is interested in researching ME/CFS and that the research applications they have received have been poor. At Tuesday’s CFSAC meeting Cheryl Kitt, the Deputy Director of the Center for

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Couple battles ME and HIV

The moving story of Franky, an ME patient and Randy, his HIV positive caretaker and partner. Every once in a while there along comes a story that leaves even me teary-eyed. Waking up this afternoon after my siesta, I opened my email to discover this true gem from the Huffington Post Blog of Dr Franky Dolan. I

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Lipkin and Hornig nail #ChilliMEchallenge as donations top $0.75 million

Three Quarters of a Million Dollars for ME/CFS Research at Columbia University! [pullquote align=”full” cite=”” link=”” color=”#E7453A” class=”” size=””]”ME/CFS is a global problem that we need to address – it robs people of the most productive years of their lives, it causes immunological dysfunction, profound fatigue, cognitive dysfunction. It really destroys peoples’ lives. It is

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