Some people have unexplainable or mystery illnesses - whether it is unknown what exactly they have, but also how to treat the rare disease. And if somehow a doctor figures out how to treat the disease, then they may not know how to get the word out to other medical professionals. But it turns out there is a way to tell others this valuable information - CURE ID.
It turns out that within the FDA there is federal official Heather Stone who has worked tirelessly on this problem - that is, to help doctors find new treatments for rare, deadly diseases. A site and app called CURE ID has been developed by her small team to collect such stories (it collects stories because studies haven't been done). To keep it in perspective - there are about 10,000 known rare diseases.
The following tells the incredible story of a devastating mystery disease (brain-eating amoeba called Balamuthia) in a young girl, a treatment that finally worked, and the role that CURE ID could play in the future. CURE ID is especially interested in repurposing existing medicines, that is, using medicines already in existence, but now for rare diseases (this would be an off-label use).
Excerpts from Michael Lewis's article in the Washington Post: The free-living bureaucrat
"...The FDA couldn’t allow just anyone to post anything. CURE ID — as the site and app became known — needed to be at least lightly refereed to keep the kooky stuff out. The point was to collect the stories that weren’t collected in medicine because they were stories, not science. Case studies, not randomized controlled trials. “Most journals won’t publish case reports because they don’t think they are valuable because they are merely anecdotes,” Heather said. For rare diseases, these anecdotes were all you had to go on, and some of them certainly had value — even if they told you about some treatment that had failed. You didn’t want people saying you could cure covid by drinking bleach. But short of that, what doctors had done with patients dying from rare diseases, and how those patients responded, had obvious value." ...continue reading "A Site That Collects Stories of Treatments For Rare Diseases"
Over the years the treatment of sports-related concussions has really changed. It used to be that the person was told to rest in a darkened room for several days, but lately research has been suggesting the opposite.
Many people to this day avoid eating nuts because they view them as high calorie and high fat (umm...probably because the medical establishment said that for years). However, studies in the past decade repeatedly found that frequent nut consumption has health benefits.
One message keeps being supported by research: Eat a diet rich in fruits, vegetables, seeds, nuts, whole grains, legumes, and olive oil. A reason is because this diet is anti-inflammatory. And it turns out that inflammation is at the root of many diseases, including heart disease. And dementia.
The CDC currently
Tick-borne encephalitis is a serious viral infection of the central nervous system. It starts out with symptoms such as fever, headaches, chills, but