Thread by @loscharlos

“One of the big issues with #LongCovid… is that the people who are the most motivated to do something about it have the least amount of energy and ability to cause a scene,” @LisaAMcCorkell said calmatters.org/health/coronav…

“..countless stories of #LongCovid Californians. Recent CDC surveys suggest 5.5% of California adults — roughly 1.5 million people — currently experience the.. debilitating collection of symptoms that make up long COVID. A majority of them, 82%, have limits on their activity.”

“While most of society rushes eagerly back to pre-pandemic life, these patients, known as ‘long haulers,’ have been largely left behind by their communities, doctors and policymakers.”

“The Senate Special Committee on Pandemic Emergency Response was not reinstated this year. A spokesperson for Sen. Josh Newman, a Democrat from Fullerton who chaired the committee last session, said there hasn’t been any conversation about #LongCovid since last year”

“Instead, policy legwork has fallen on 2 people: @LisaAMcCorkell & Art Mirin.. McCorkell & Mirin have drafted budget proposals, solicited letters.. & met with legislators... They’re doing work that political power players pay lobbyists millions.. to organize — so far to no avail”

“She and Mirin wrote last year’s budget proposal for the state to fund research, training and treatment centers at UC medical campuses and other academic centers. Mirin said it has been challenging to find a champion for this issue.”

“Officials with the California Department of Public Health plan to create a new COVID-19 Control Branch to monitor variants and outbreaks and support #LongCovid research, said State Epidemiologist @ericapanMD_CDPH.”

“Mintz avoided COVID-19 for more than two years, but in August he went to a bar to celebrate his 59th birthday. It’s there where he most likely contracted the virus. By September, Mintz found he didn’t have the physical or mental stamina to do much of anything.” #LongCovid

“After two-and-a-half hours of activity, his limbs would get heavy and his thoughts would muddle. You could almost set a clock to it,” Mintz said. “Suddenly it would be very difficult to put one foot in front of the other.” #LongCovid

“In January, Mintz was stacking chairs at a local bar where he works as a security guard. Within 10 minutes he got dizzy & couldn’t lift his arms anymore.”

“I actually cried then. I’ve been depressed over this and frustrated,” Mintz said. “I couldn’t believe I’m so weak.”

“Mintz went to his primary care doctor in Fresno for help. He said he thought he had #LongCovid and was met with skepticism.”

“His first reaction was that he hadn’t really heard of it,” Mintz said.

“COVID-19 first hit Mindy, a 37-year-old SF native, like a mild flu.. But on day 5 of her illness she looked at a text.. and couldn’t make sense of the words. It looked like gibberish.”

“That really scared the shit out of me,” Lym said. “I knew it had gotten into my brain.”

“She has spent every day since then chasing after an elusive recovery. Like McCorkell, Lym #POTS & wears compression garments like stockings & a corset to improve blood circulation. She also has mast cell activation syndrome”

“For three months, Lym, who formerly worked as a music teacher and theater performer in San Francisco, could barely walk and needed a full-time caretaker to dress and bathe.” #LongCovid

“The demand has been extremely high,” said Dr. Linda Geng, co-director of @Stanford #LongCovid clinic. The clinic sees about 12 to 15 new patients each week and has an eight-month average wait time.”

“Yet even as patients like Mintz and Lym struggle to get into a specialized clinic, UCLA physician Viswanathan said she has heard from multiple colleagues at other facilities that are considering closing their #LongCovid clinics or reducing hours”

“How do health care systems invest in programs like #LongCovid clinics, like hiring more clinicians? Health care organizations have been battered over the last few years, but I don’t see any government relief.”