Researchers at the University of Florida in Gainesville are overwhelmed by the hundreds of emails they have received from people after results of their study garnered social media attention.
Laurence Morel, Ph.D., director of the university’s experimental pathology department and co-author of the study, spoke about the research the team has been doing on mice at a conference held in Cuba in mid-June.
Morel said it appears somebody from the conference posted something on a Facebook page that made the research findings more promising than they really are at the moment.
Since then, Morel has received more than 300 emails, many written in Spanish or Portuguese, asking about a cure or how lupus patients can participate in the human treatment trials.
Some lupus patients have even called Morel, pleading for more information. She had to tell them the research is preliminary and might some day benefit them, but an actual treatment is still years off.
“I felt horrible for them,” said Morel. “There were a lot of terrible stories.”
Doug Bennett, a science writer at the Florida university, has been tasked with responding to the emails sent to Morel.
Bennett said replies are being sent out in English, Spanish, and Portuguese explaining the situation.
“It’s a very common disease,” said Bennett. “Any time there is talk about a cure for something like this, there is a lot of response.”
Research in Mice Is Promising
Morel’s team published the initial findings on their research in February.
It was reported in an article on Healthline as well as in other publications.
The scientists announced that by using a combination of two drugs they were able to reverse lupus in mice.
Since then, the Florida researchers have continued their studies using mice as well as human immune cells in an in vitro environment.
The Healthline article itself was visited almost 16,000 times between June 20 and July 5, four months after its February 11 publication.
That story now has more than 200 comments, many written in Spanish or Portuguese. Some people are even leaving email addresses and phone numbers. A large number appear to be from Brazil.
Similar to the requests Morel has been getting, many of the story’s commenters are asking how they can become involved in human trials.
Morel’s team is applying for grants to conduct human studies. However, the experiments would take four or five years and would require about $1 million to complete.
University officials are hoping they can find someone to fund the research.
“That would be huge,” said Bennett. “That would be amazing.”