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Who is erasing long Covid?
One of the worst side effects of poor pandemic leadership continues to be ignored
The Covid pandemic could not have hit at a worst time for America, given who was sitting in the Oval Office. As the documentary “Totally Under Control” explains, pandemic preparedness drills had been run prior to Covid with the results showing that leadership and policy makers were the key variable in the simulations. In vivo, Trump’s fumbling of the pandemic response is a stain on our nation, and thanks to our influence globally this stain has permeated internationally. The Midas in his own mind has long branded his name on nearly everything (in gold, of course) but the one place he’s left his legacy most is the unnecessary Covid destruction under his reign and the sharp rise in anti-science left in his wake.
To be clear, Trump had quite a bit of help in botching his responsibility to protect the American people between March 2020 and January 2021 - and he’s had plenty of help since from the rest of the GOP and their aligned media. The Trumpian disdain for science did not go away with his presidency’s violent, sloppy end. Like most Trump ventures he just put his name on something; the root of modern anti-science goes back decades to the Christo-fascist Council for National Policy formed in the early 80s. The CNP made two recent risky underestimations: how hard both Covid and Trump would be to shake.
While the current administration has focussed on vaccination efforts to right the wrongs of their predecessors, the issue has gotten so out of control that this is not sufficient. In addition to causing hundreds of thousands of unnecessary deaths and economic suffering, Covid infections have turned to the chronic condition known as long Covid. The long term sequelae of Covid can be incredibly disabling, but Trump made his lack of care for members of the disabled community clear on the 2016 campaign trail and was accepted in by the GOP. The lack of energy and resources dedicated to those impacted by long Covid is more surprising from leadership on the left.
Millions of Americans are suffering from long Covid. And yet, those with the illness are fighting to be believed by the right behind the worst mishandling of the viral pandemic and fighting to be taken seriously by the left that would rather move on from dealing with all things Covid. Caught in the middle, the Covid long hauler community is being erased. The most egregious examples of their erasure by the medical community come from the same voices - and political affiliations - we have come to expect with pandemic disinformation.
The dark money Brownstone Institute, the “spiritual child” of the mass infection Great Barrington Declaration, recently published a piece claiming long Covid could be “mask induced exhaustion syndrome”. The article was reporting on a study from a German group and continues the right’s cherry picking of studies for the narrative. The first author on the study, an orthopedic surgeon, is likely used to wearing masks for hours-long operations and understands why that masking is done and other precautions are taken to reduce the risk of infection. Masks have long been a cornerstone of hospital personal protective equipment; long Covid did not show up until the virus did.
Anti-mask oncologist/podcaster and full UCSF professor Dr. Vinay Prasad and his apparent contrarian mentee Dr. Jeffrey Bien caught some well deserved flack on Twitter for their careless discussion of long Covid recently. As all oncologists would understand, masking is especially important around immunocompromised individuals like cancer patients. Prasad has a history of pre-pandemic professionalism issues as discussed in this 2018 article from The Cancer Letter. It features a telling quote from Prasad: “RCT or STFU!”. Prasad has spent much of the pandemic complaining on the internet that there are not randomized control trials studies to validate mask usage during a deadly pandemic caused by a respiratory virus. Despite his dramatics and spread of disinformation in the middle of a global crisis, Prasad received a promotion from UCSF.
Prasad is a member of the Urgency of Normal with Dr. Tracy Beth Høeg who we have discussed at length here. The group can be understood as a kid-focused repackaging of the Koch-tied Great Barrington Declaration which was signed by and US and UK bad actors. While Høeg has testified to Congress on the impacts lockdowns (the source of revenge fantasies from the GBD crowd) had on American children, UK journalist Stacey Poole has been doing a series of videos on British children with long Covid. This is inspired by her own experience as a mother of a child with long Covid and the contrarian crowd would do well to listen to her experience.
In the US, in an absence of leadership from government, leaders within the long Covid community have emerged to advocate for visibility and assistance. Amanda Finley of Kansas City, Missouri runs the Covid-19 Long Haulers Discussion Group, an online community boasting 15,000 members worldwide. The group provides a source of peer support, networking to find medical providers up-to-date with long COVID, validation, patient education, advocacy resources, town hall forums with long COVID researchers and providers, a support line that can be called or texted 24/7, and media opportunities to raise awareness. She highlights how while Covid is new, post-viral illnesses and disability are not and that “we have failed for years to ignore the pleas and warnings from Myalgic encephalomyelitis/Chronic fatigue syndrome, Ehlers-Danlos, dysautonomia, and POTS patients.”
Finley’s own story is one of incredible resilience. After becoming disabled from long Covid, Finley was unable to work and became homeless. Nevertheless, while living in a tent in the woods, she organized and advocated for fellow long haulers. As a thanks, she received targeted hate from the likes of tech millionaire turned anti-vaccine political propagandist Steve Kirsch.
I spoke with her a couple weeks ago about fighting misinformation on the group’s livestream.
Ignoring those affected with long Covid does not make their suffering go away. They are victims of failed leadership. They need help but first their existence needs to be believed. There’s no hope for help from those unwilling to soul search and be honest, but there is hope that stories like these are being told. They need to be shared. Please don’t let them be erased or ignored; that only causes more preventable suffering and hasn’t there been enough?