The National Human Genome Research Institute (NHGRI) will launch the National DNA Day Reddit “Ask Me Anything” (AMA) Series on Friday, April 20 at 2pm EST. Genomics experts will answer questions at the Reddit Science community forum, “/r/Science“. A Reddit AMA is an opportunity to ask interesting individuals questions about anything and everything.
This AMA will focus on Dr. Collins’ experiences during the Human Genome Project and how he envisions the future of precision medicine.
If you are unfamiliar with Reddit AMAs, read through this helpful overview. In the past, Reddit AMAs have been used by high-profile individuals such as Snoop Dogg, Jerry Seinfeld, and Barrack Obama.
The time to mobilize is now. Let’s flood Francis Collins with hard-hitting questions asking him about why he hasn’t done enough to help people with Myalgic Encephalomyelitis. Remember: AMAs are public and the purpose is for everyone to see both the questions and answers. This is why it is crucial to make sure we frame our questions correctly to educate the public that may not be familiar with ME. People from all walks of life will be participating, so in many ways, it may be more impactful to consider your audience rather than focusing on eliciting a polished response from Francis Collins.
Here are some examples:
“You drastically underfund a number of complex, chronic illnesses including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), POTS, Ehler’s Danlos Syndrome, etc. even though they devastate millions of Americans. Why is that?”
“There are 1-2.5 millions Americans who are affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and 75-85% are unable to work while 25% are homebound or bedbound. What are you doing to help these Americans get back on their feet?”
“Because there is no cure, not even treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), an estimated $17-24 billions dollars are wasted in medical expenses and lost productivity due to patients’ inability to work. When will you end the neglect?”
“How do you envision the future of precision medicine for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), when up to 2.5 million Americans have it and continue to be ignored?”
#MEAction recognizes and celebrates Pride Month! As a community that welcomes and encompasses all, this Pride Month, we asked members of our LGBTQIA+ community to share what Pride means to them and what they have learned from this movement that they bring with them to the ME movement. Here are a few responses: Kristina Osobka-Stier