Former science reporter at The Washington Post and elsewhere. Disabled by complex chronic post-viral illness. Living on #Kauai#Hawaii. Grew up in Wisconsin. Occasional SCUBA diver.
Six year ago, I returned to NIH in Bethesda, where I started my career as a science writer, to be a patient in an ambitious study to understand the patho-biology of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The study included 30+ researchers & many substudies, and was essentially a fishing expedition to understand what goes wrong to make us so sick (like bedbound-for-years sick). 1/24
The study began after I wrote to then-NIH Director Francis Collins, whom I had talked to in my job as a science reporter at the Washington Post, imploring him to invest in understanding ME/CFS, which has been neglected for decades. I also knew other top administrators at NIH and so decided to use my connections to try to get some movement.
Collins, to his credit, emailed me and said he would move fast. This was in 2015. And he kept his word. He gathered some top clinicians at NIH and told them to design an intramural study - meaning it would take place on the NIH campus in Bethesda, Md. - to try to figure out what goes so wrong in the disease. Collins chose neurovirologist Avindra Nath (pictured with me above) to be priniciple investigator. Nath is the head of clinical neurology at the NIH Clinical Center.
A 2015 Institute of Medicine report had reaffirmed that ME/CFS was a biological, not psychological, disorder, and there had been other pressures on Collins to act. So he moved responsbility for ME/CFS out of the small and under-funded Office of Women's Health over to the National Institute of Neurological Disorders and Stroke, a more appropriate home.
I don't think people are realising the danger the Fediverse is in.
The only thing stopping corporations and VCs taking over this place is that the Fediverse is spread out on many different servers, which makes it very difficult to purchase.
If most of the Fediverse ends up on mastodon.social, which is now a strong possibility, there will be nothing to stop most of it being sold to Musk or Zuckerberg or whoever.
The bigger mastodon.social becomes, the more likely a buyout is to happen.
The #SpaceX launchpad was severely underengineered...flying chunks of concrete likely damaged the rocket itself and lots of ground equipment, sent debris onto the beach and into the nearby bird sanctuary.
I'd bet a lot of photographers also lost their gear set up for remote shots of the launch.
So irresponsible. This outcome was predictable but EM didn't want to spend the time or money to build a flame diverter & sound suppression system (water dump used at Kennedy).
Here's a photo I took of Launch Complex 39A at Kennedy Space Center in 2012. It's basically a mountain of concrete. The flame trench (right side) diverts the thrust sideways. The #SpaceX pad in Texas was puny in comparison despite launching a rocket more than twice as powerful as shuttle.
I like to take photos of the landscapes & wildlife here on Kauai, so here's Hawaiian monk #seal H92 (they're all tagged). About 1400 of these seals exist today & NOAA has done a great job increasing their numbers of late. They dig these face trenches in the sand to cool off but it's a good metaphor for a lot of things these days. #photography#animals#mammals#Hawaii#beach#ocean
Hello sciencemastodon. Just migrated over from another instance. Many of you know me, but for those who don't, I'm a former science reporter in DC, now disabled & living in Hawaii. I write occasionally, usually about the neglected illness myalgic encephalomyelitic/chronic fatigue syndrome & long covid (which often strongly resembles ME/CFS). Looking forward to seeing how mastodon works out for folks.
