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
I have an article out today that's about how one person's determination to solve her own complex health problems led to an extraordinary effort on the part of one lab at NIH & a discovery that could lead to treatments for chronic fatigue syndrome & #LongCovid.
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).
Rumors of Zuckerberg's underground Bond villain lair have been circulating Kauai for a while now...I know someone married to a carpenter who's been going there for years to work on NDAed shit.
Yeah, he's an asshole neighbor and nobody should own that much of this island.
If you have #LongCovid or #MEcfs and are considering filing a long-term disability claim, this white paper by my old lawyer, Barbara Comerford, is a must-read.
Barbara has been helping people win lawsuits against insurers for three decades now.
She took my case against Prudential to federal court & kicked their asses so hard the judge wrote an absolutely scathing ruling against Prudential that set some precedents.
Yes, more transparency please. Navy fliers are describing encounters that include lots of sensor data, which is being kept hidden. Open it up and let civilian scientists take a look.
One of the annoyances of the modern digital world is that editing existing .pdf files is challenging. Adobe now charges for the privilege, it appears. Anyone know of any free or open source pdf editing software? I want to add text to an existing pdf that is not a form...I just want to type on top of the document.
So many websites seem to offer this service but then charge you to download the document.
Today is the 2 month anniversary of the death of my partner, Beth Mazur, and it's also the publication day of an NIH study on ME/CFS that I took part in as a patient & that Beth was involved with as an advocate. She supported me during the 21 days I was at the Clinical Center & pushed the scientists to work faster & do better. I'm very happy reporter Jennifer Couzin-Frankel mentions Beth in her #Science article today.
I watched "The Wandering Earth Part II" last night. It's based on a Cixin Liu novel. If you love improbably enormous engines pushing moons and planets out of their orbits - and who doesn't?? - you'll love this #film.
You know the mistake was really bad when the Times runs an editor's note explaining their fuck up. Rare indeed.
"However, the early versions of the coverage — and the prominence it received in a headline, news alert and social media channels — relied too heavily on claims by Hamas, and did not make clear that those claims could not immediately be verified. The report left readers with an incorrect impression about what was known and how credible the account was."
I have a friend on the extreme end of #covid phobia. Won't leave the house to see an old friend (not me btw). He's totally stuck, and he knows it's maladapative, but... Nothing is zero risk. Staying home forever with no socializing at all is also risky & bad for (mental) health.
The government response is shit, yes, but individuals still have agency and can vastly reduce their risk. Withdrawing from society forever over covid is not a great solution.
People with #ChronicIllness that limits energy and uprightness like POTS or #MEcfs will recognize this pattern of mine from last week. Down days and then days when I take stimulants to do some stuff, then more down days.
I miss the Twitter #disability community but hoping to find more folks here.
In 2017 I was an inpatient at the NIH for their first on-campus study of myalgic encephalomyelitis/chronic fatigue syndrome in 30 years.
The study is being published next week...7 years later.
The researchers were thorough & dedicated but the study was so ambitious that it was under-resourced. They cast a wide net w/ many tests & technologies to generate hypotheses. I spent 21 nights at the Clinical Center over two visits.
