7157 Followers
728 Following
This account will prob be about biomed research—complex chronic illnesses and Covid—w/some material on disability justice and organizing.
ME ‘05, LC ‘23, many of their friends along the way. Very severe (FUNCAP 0.6). No unsolicited advice please!
Wrote a little bit about living with severe ME, a humanitarian crisis we must end.
August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound.
1/
Scientist who studies AIDS: "at the beginning of this year, it was very much, oh, you can’t talk about social vulnerability in these ways for research purposes. &that really hampers our ability to think thru how infectious diseases work its way into human populations." inewsource.org/2025/08/08/s...
UC San Diego scientist Davey Smith tells us what it's like to be a scientist amid federal funding cuts and banned words.
More details here donoharmbc.ca/national-sta...
The Canadian Standards Association is looking for public feedback on an update of a national standard for N95s (and other respirators).
The Canadian Standards Association (CSA) has released a draft standard requiring masks (like N95s) in health care settings to stop airborne infections.
There is a strong attempt to push back against this, so need your public comments to get this through: publicreview.csa.ca/Home/View/22...
Right it’s the opposite of excusing it—it’s because it’s unacceptable that we have to do what’s actually needed to prevent it.
I don’t know how to cope with knowing how many of these deaths are completely avoidable. We do NOT have to live like this, and yet.
Fucking heartbreaking in every direction.
This came to mind for me too. And, to be honest, people w/postvac syndrome are even more abandoned than infection-triggered Long Covid, which is saying something.
(To prove the point, there will almost certainly be people in my replies claiming postvac is not a thing. Please don’t, I will block.)
I hate to say this and am no ways saying this lightheartedly, but leaving long COVID untreatable is going to continue to lead to suicidal ideation & the consequences of despair. Organized abandonment breeds violence. There are heartbreaking consequences to just ignoring reality, leaving ppl to die.
Totally think interactions among different infections and their immune responses may be a critical topic. I’m eternally fascinated by this study finding a common cold may predispose people to Long Covid.
Prior infection with a common cold coronavirus may predispose some people to develop Long COVID.
Pretty stunning result. Would note, all had postvac ME from a Covid shot, and the study was conducted from August 2022 to February 2024, so all had been sick less than three years. Would expect to see some spontaneous remissions in that period.
Efficacy of vitamin D replacement therapy on 28 cases of myalgic encephalomyelitis/chronic fatigue syndrome after COVID-19 vaccination
www.sciencedirect.com/science/arti...
Results very different to this UK trial pubmed.ncbi.nlm.nih.gov/25455721/
Screenshot from AMMES newsletter #PwME #MEcfs #CFS
