As the FDA Stakeholder Meeting approaches, we explore the various ways that patients can get involved – and offer some suggestions on how to make the most of this unprecedented opportunity. On April 25-26, 2013, the United States Food and Drug Administration (FDA) is holding a workshop in Bethesda, MD to discuss how best to facilitate and expedite the development
Continue
Dr. Maria Gjerpe, an ME patient for 30 years, explains how and why MEandYou are going to crowdfund a Rituximab study. Within 90 days we are going to raise 7 million Norwegian krone ($1.2 million) to fund a study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway. Will we – the patients, relatives, friends – be the first
Continueby Sasha Quick! You have 27 seconds to win $5,000 for an ME/FM charity! So please – don’t think! – do this now and then come back and read about why you did it: Go to the Share the Bounty charity voting page. Click on ‘N’ to get the list of charities beginning with ‘N’. The second one down is
Continueby Sasha The internet! Full of lovely free stuff. Until recently, we expected to get our news, expert advice, gossip – pretty much everything on the web – without paying. Some content providers write for fun and don’t seek payment, but others need an income from their work. They get that via click-through advertising or because their content is advertising
Continue
Carol Schmid examines what it is about the nature of ME/CFS that makes it likely to generate skepticism. Despite ME/CFS being an illness so severe that it has been found to cause a poorer quality of life than any major illness including cancer [1], its sufferers continue to be disbelieved, shamed and abandoned by doctors, friends and family. It is
Continue
Jody Smith continues her review of Nova’s Patient Conference for Dr Klimas with a look at three patients who have improved significantly. “No one has ever taught me more about what to do than my patients.” So said Dr. Nancy Klimas at the Patient Conference hosted by Nova Southeastern University on January 26, 2013. This has to be one of
Continue
Joel (Snowathlete) continues his series on zoonotic pathogens with a thorough examination of Borellia and Lyme disease – and their possible relevance for ME/CFS patients. Borrelia is the bacterium that causes borreliosis. It is a microscopic spiral-shaped parasite. There are many different species of Borrelia, some of which cause Lyme borreliosis, otherwise known as Lyme disease. Borrelia is a zoonotic
Continue
by Jody Smith A Patient Conference for Dr. Nancy Klimas was hosted by Nova Southeastern University on January 26, 2013. I was delighted to see Vonnie Kennedy’s article A Celebration of Hope and Progress with her first-hand view of the morning sessions. Vonnie did not have the advantage I’ve had of being able to see the videos from the conference,
Continue
Simon McGrath explains how Mady Hornig is applying tools used to understand other complex illnesses in an effort to unlock the secrets of ME/CFS. In a recent article I looked at the huge studies Professor Mady Hornig has underway looking for pathogens or signs of immune abnormalities in ME/CFS. While these are immensely impressive, I thought they were eclipsed by
Continue