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
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.
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.
I was patient #4 when I arrived in April 2017. The study was grueling. I wore an ECG cap for a sleep study (I didn't get much sleep); had a difficult spinal tap; donated 10 million blood stem cells; had 29 vials of blood taken in one go (fun morning!); took extensive cognitive exams; spent three hours relating my entire health history to the lead clinician in the study (Brian Walitt); and on and on. I stayed as an inpatient for two weeks, with a weekend off. 6/
While the protocol for the study was designed and approved in a month - very fast for NIH - it took almost a year to stand up the study, hire some support staff, and begin recruiting patients and healthy volunteers as controls. You can see the study details below. 5/
Patient advocates implored Nath to speed up the study by, for instance, bringing in two patients simultaneously. Or to bring in a patient and a healthy volunteer together. They tried this but decided they didn't have the staff bandwidth to do it. Nath and Walitt both had many other responsibilities & studies to attend to. As a senior NIH official told me about this whole thing: Everyone at NIH has a full plate. They have to push some stuff to the side to make room for new things. 8/
Patient recruitment was slow; the aim was 40 patients in the first phase, which would be winnowed down to 20 for a second visit to NIH a year after the first. I'm not sure why recruitment was so slow. There was skepticism in the patient community due to NIH's longtime neglect and dismissal of the illness. 7/
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.
