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
Ampligen price more than doubling in the US? As many patients who are receiving Ampligen in the US already know, the price of Ampligen is set to dramatically increase. Two patients I spoke with today said the price would more than double from $75 a vial to $200 per bottle. At their current dosages, that would raise the
Saturday, August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe myalgic encephalomyelitis as well as a day of remembrance. August 8th was the birthday of Sophia Mirza, a 32 year-old woman who died of ME. Here are three ways you can observe the day: 1) Join the Twitter
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]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.”[/pullquote] The Open Medicine Foundation’s Severely Ill Patient Big Data study has gotten a HUGE boost with the help of an anonymous donor. This $500,000 donation will
A new Danish study shows that ME patients have among the greatest levels of disability when compared to other common diseases: [pullquote align=”full” cite=”” link=”” color=”#E7453A” class=”” size=””]ME/CFS has the lowest health-related quality of life score when compared to cancer, diabetes, lupus, stroke, heart disease and chronic renal failure.[/pullquote] The study surveyed 105 patients. 27% of ME
A constituent with ME in the Australian Capital Territory (ACT) sent the Chilli ME Challenge to one of her representatives and she took it up! Nicole Lawder was elected to the ACT Legislative Assembly as the Member for Brindabella in 2013. ME needs Allies wherever we can find them, especially in the political arena! Thank you Nicole
Using a new technology that allows the sampling of living T-cells in real time, researchers at Stanford University have found that men and women turn on and off immune system genes differently. This may help explain the much higher incidence of autoimmune diseases like scleroderma, lupus, and multiple sclerosis among women. It may also help explain why
Meet Mike, the man behind Mike’s EU Marathon Challenge Mike has pledged to run 28 marathons for Myalgic Encephalomyelitis awareness and Invest in ME Recently I interviewed Mike from Mike’s EU Marathon Challenge to get to know the man behind the impressive goal. If you don’t remember, Mike recently pledged to run 28 marathons for
Why $250,000,000 in research funding? The #MEAction flagship Funding Equality Petition is called “Tell Congress to Support Funding Equality for ME” because we’re asking the United States Congress increase NIH Research funding for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) to $250 million per year. Most patients, doctors, and researchers in the ME/CFS community agree
The National Institutes of Health have released the results of their 1.5 day workshop on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The full P2P workshop abstract is available online but some of the most interesting and important points are excerpted below. Leave a comment and tell us, what do you like about the report? What don’t you
