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
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
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
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
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
#MEAction recently launched as an online platform to help anyone become an advocate. Now we are announcing our own advocacy action: A quick-strike lobbying campaign this August to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health. We launched this effort to capitalize on the 21st Century
DePaul University researchers invite persons with ME, CFS, MS, Lupus, and Cancer to participate in a voluntary research study to determine which symptoms may be commonly experienced by individuals in multiple fatiguing illness groups, and which symptoms may be unique to each illness. Participation includes completion of a confidential online questionnaire, which takes approximately 45 minutes to complete.
I am one of the 250,000 people in the UK suffering with CFS/ME. Please help us to get the help that we so desperately need.
The UK’s National Institute for Health Research (NIHR) is asking for suggestions from patients, carers and members of the public for tests and treatments that need to be researched.
This is the UK government review on how to get newly researched treatments and tests to patients more quickly and has asked patients to engage with our views.
