The recording is hard to hear, the doctor's voice a bit distant. But he tells Hickson: "The decision is: Do we want to be extremely aggressive with his care or do we feel like this would be futile?"

And then he adds: "As of right now, his quality of life — he doesn't have much of one."

Hickson challenges the doctor. "What do you mean?" she asks. "Because he's paralyzed with a brain injury, he doesn't have quality of life?"

"Correct," the doctor replies.

“The mass mourning I hear my able-bodied counterparts partake in – over their loss of in-person social contact, of concerts and comedy shows and nights at the movie theatre and pub crawls, of hugs and tickles, of a big vacation they had planned – hits a numb wall of protective indifference in my brain. Some of these are things I barely ever got to experience as an adult, and certainly rarely without physical consequences. Others I lost the ability to do more recently and am still grieving for afresh.

And then there’s the at-home activities they are doing and posting on social media. Things I pine for. The jigsaw puzzles that hurt my neck too much. The DIY projects that I lack the dexterity for. The rekindling of a passion for playing a musical instrument, something that I can technically still do but usually only up to five minutes daily. The snuggling with pets that I am now too allergic to own. The cozying up to significant others and children that I lack. The gluten-filled comfort snacks and alcoholic drinks that my body rejects.

Even the housecleaning and organizing projects that I simply lack the strength for. The cooking that I can’t do. The Netflix binges and movie marathons that I cannot do (on a very good day, I can get through a single movie, but usually not uninterrupted). The reading that I cannot do. The video games that I cannot play. It’s not just one thing. It’s all the things.“

I’m sure I’m going to be horrified by the whole study, but I felt I should bookmark it for future rants about (lack of) ethics in research, and the importance of scientists evaluating their life choices.

FINALLY, a judge rules that standardized tests are discriminatory.

"Among the 143 people interviewed for the report, only 18 were symptom-free 60 days after their hospital discharge. More than half of the people interviewed said that they still experienced three or more symptoms, among which fatigue was the most common issue cited."

Maybe Covid-19 will result in some good research for people with ME/CFS.

“One of the most chilling aspects of this sordid tale is the assertion that “in the immediate postwar years, a rogues’ gallery of wanted and convicted Nazis, mass murderers who had practiced their science in notorious death camps, ended up working at Grünenthal, some of them directly involved in the development of thalidomide.” One of the most reprehensible was Otto Ambros, an inventor of sarin (the nerve gas), who had been convicted of mass murder at the Nuremburg trials but was subsequently freed. After helping the US chemical industry, he went on to become chairman of Grünenthal’s advisory committee when thalidomide was developed. Newsweek’s Roger Williams and Jonathan Stone (no relation) give further horrifying details about links between Grünenthal and other Nazi’s as well, some of whom experimented on inmates at concentration camps such as Auschwitz and Buchenwald. Another former Nazi, Heinrich Muckter, received huge bonuses for rushing thalidomide to market, despite inadequate testing.”

“The odds of having a child born with birth defects during or after the war were more than a third higher for veterans who say they handled, sprayed or were directly sprayed with Agent Orange than for veterans who say they weren’t exposed or weren’t sure.“

“When we [military scientists] initiated the herbicide program in the 1960s, we were aware of the potential for damage due to dioxin contamination in the herbicide. We were even aware that the military formulation had a higher dioxin concentration than the civilian version, due to the lower cost and speed of manufacture. However, because the material was to be used on the enemy, none of us were overly concerned.” (1988 letter from Clary to a member of Congress)

Check on your neighbors.

Legalese encouraging parents to waive their child’s rights to an education if they don’t agree with a watered-down education plan.

The pandemic is hitting the disabled community hard.