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.
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.
"We don't have clear theoretical guidance on what to look for." - Proponent of new particle collider.
I'd love to see vigorous debate in #science and #physics communities about whether building a $20 billion particle accelerator makes any sense. LHC confirmed the Higgs Boson & what else?
Is it verboten to suggest bigger colliders might be dead ends?
Wow. Jet Propulsion Lab laying off over 500 people due to uncertainty from Congress on funding; memo tells everyone to stay home tomorrow as people are canned.
I was thinking after posting this #LongCovid study press release (https://mastodon.social/@grimalkina/111865221166798152) that many people might not know major universities very often put out press releases about complicated but important research! I find these press releases are far higher quality than quick media news pieces, and it's really worth taking a look at the lead author of a paper and finding their institution(s) and looking for the press release. Folks working in these offices are often scicomm professionals 🤗
@grimalkina I wrote about science at a few universities and we relied on faculty bringing interesting work to our attention. If we didn't hear about it, we couldn't promote it.
Natl Assoc of Science Writers issues statement on #AI & generative tools: "...we at the National Association of Science Writers (NASW) commit to not using generative A.I. tools like ChatGPT or Bard to replace work done by human writers and editors."
Why Is Nancy Pelosi Slandering Democrats’ Own Voter Base?
This week, Nancy Pelosi suggested that supporters of a cease-fire in Gaza were foreign government “plants.” But the demand for a cease-fire is wildly popular among Democratic voters — and party leaders are playing a dangerous game by insulting them.
@mostaurelius Pelosi quote from Meet the Press: "I didn’t say they’re plants. I think some financing should be investigated,” she said. “And I want to ask the FBI to investigate that.”
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.
My friend does massage for a hotel on the island that charges $1000 a night and somehow they haven't been able to pay her. Life as a contractor is life wasting your time chasing checks from billion-dollar corps.
When I was a freelance journalist, Conde Nasty was one of the worst to work for. Always took multiple calls and emails to get paid.
We have talked a lot about the positive sides of the Fediverse, but not as much about the downsides. For me the top negative things of this free and healthier social web are:
People are patronizing. This happens a lot more than in other places. I mostly mean the unsolicited advice: Alt text, don’t post this or that, avoid commercialism, other social medias and use content warnings for everything. While many mean good, it has been often very aggressive. This happened a lot in 2022. For a while it made the bar to post much higher because I was afraid to make a mistake. Today I don’t care as much.
Nitpicking. Comments are nice, but not when people are overly criticising about what you do or concentrating in irrelevancies. Whataboutism is the worst side effect.
Everyone has their own rules and they are often contradicting each other. Some are extreme and block every other instance, some more allowing. You might accidentally break many rules around the Fediverse without even noticing it (some servers don’t allow posts about meat or alcohol for example).
Politically too left. It seems it is not allowed to be very conservative here. People are anti-commercialism, anti-capitalist, anti-anything.
While saying this, I do not stumble upon these downsides very often since I am quite a chill guy and have my own server. I feel like I can post whatever the fuck I want.
However, I do wonder if these things are the ones that make the Fediverse less approachable by new users. On the other hand I believe the new open social web will transform the way we see the social media in general and soon it does not matter, we don’t have to think what is ”here” when the big players like Threads and Tumblr adapt ActivityPub.
@rolle I've seen all of these but the biggest issue for me is that if some servers decide to defederate from the one I use, and it breaks some connections, I don't think I'd ever know. And there seems to be plenty of defederation over what looks to me to be issues that could or should be resolved at the user level.
This article. Beth was one of the most knowledgeable people in the world on ME/cfs and long COVID. When I added that line to her obituary I asked around if I needed to qualify it. Universal answer: No.
Friend: My visitor has a faint line on her #covid test after 10 days and her doctor told her to stop testing because she's no longer contagious. What do you think, Brian?
Me: Which line is faint, test or control?
Her: Test
Me: Full hazmat suit and I'll bring you a P100 and maybe you should tell her to find a hotel.
(Then I ask how much she wants to hear about how fucked up the whole situation is.)
Really good piece that details a large clinical trial of a rheumatoid arthritis drug that Dr. Ely is heading up. Finally - a large drug trial for #LongCovid
