“We conclude that long Covid is a real condition,” committee chair Paul Volberding, a professor emeritus of medicine at UCSF, said in a video conference Wednesday. “People suffering from it have to be listened to and have to be believed and deserve the best access possible to the management strategies.”
If you want to look at a summary of research directions, this Jan 2023 paper by Davis, McCorkell, Vogel, & Topol captured some of the ongoing work. It’s another nice collection of footnotes for specific topics.
New report: More than 200 symptoms tied to long COVID.
"While there is evidence that many people with Long COVID symptoms have improved by 12 months, data beyond that time frame is limited but suggestive that recovery might plateau or progress at a slower rate"
"COVID and long COVID are not HIV/AIDS, but our response to both viruses has been to bury them, to cover disabled and high-risk people with dirt. There is silence, skepticism and denial as many of us have become immunocompromised, as thousands have died of complications of long COVID, as millions have died of COVID."
Beautiful essay by #LGBTQ columnist Miles W. Griffis reflecting on AIDS, #longCOVID, and the work of artist David Wojnarowicz.
"#MEAction recognizes that everything seems to cost a little bit more these days...as it is now costing us a little bit more to provide the programming and resources needed for this community. If you have a few extra dollars to give, we would greatly appreciate it."
Extract from comments by Dr Binita Kane in this popular Guardian article today:
"‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with #longCovid ."
"Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover"
Omg. While our symptoms are different, SO MUCH of this woman’s story could’ve been mine. I was nodding my head the entire way through. She’s captured the essence of Long Covid perfectly.
"The most a long Covid sufferer can do is manage symptoms and pray things get better. Even if things do improve, one activity too many in a day can be debilitating and set you back."
Here are some heartbreaking stories of Long Covid which, despite effecting around 2M people seems to have largely disappeared from mainstream discussions of health (although it appears on Mastodon more often). Perhaps understandably we seem now more focussed on the ever worsening NHS crisis.
However, when we turn to 'long-term sickness', we'll not get far if we don't have a much clearer idea of how & why Long Covid persists for so many.
"The results revealed significant differences in the neurophysiological parameters of P300 & beta band rhythms in subjects affected by cognitive fog, and these alterations persist even 8 months after recovery from #Covid19"
Review article. "The sustained activation of the KP [kynurenine pathway], associated with cognitive impairments & chronic fatigue, underscores the potential of KP as a therapeutic target & as a possible biomarker for #longCOVID in future studies”
"I have sat through countless GP appointments where I have had to explain the basics of Post Exertional Malaise [PEM], the cardinal symptom of ME, before going on to discuss treatment."
I've had similar doctor visits.
It's frightening that so many doctors know so little about ME/CFS.