Host and producer: Yi Ding
Writers: JiJi Wong and Creighton Ward
Chinese translators: Victoria Sheng, Stephanie Lu, and Chenxi Wu
Writer’s note: This piece was originally published as a Mandarin podcast audio, published on WeChat August '22. The original script was written in English and forms the basis for this article format.
Last episode, we previously discussed misinformation from the CDC surrounding vaccination, the myth of herd immunity with Covid, and the dangers of long covid frequency and severity, but there’s more dangers to it that the public is often unaware of. Today, we want to address medical malpractice in long covid treatment and what the consequences of public health policy encouraging “living with the virus” means for us as a society.
These findings about the severity and frequency of Long Covid should be alarming. The fact that durable immunity has not happened after seven waves of Covid and the rollout of vaccines and boosters should make people worried about future reinfections with Covid. Just as the long term effects of Covid are largely ignored and minimized, the risk of reinfection and increase in mortality associated with reinfections is also disregarded by public health authorities. Some people think that their first round of covid wasn’t too bad, therefore any subsequent reinfections are not a risk to them. This could not be more wrong. Each round of covid you get, the more health risks you face including chance of long covid and increased chance of reinfection. Damage is cumulative. You’re twice more likely to die after 2+ covid infections, and 3 times more likely to be hospitalized within 6 months of the last infection.
Knowing the danger of long covid, can it be cured? Unfortunately, it cannot be cured, only managed. The public’s fundamental misunderstanding of long covid and ME/CFS, as well as internalized ableism and healthism, is also leading to medical malpractice and mistreatment of people with ME/CFS newly disabled by the virus. Healthism is the concept that one’s health is entirely one’s responsibility; internalized ableism is ableism against oneself, which manifests as feeling like one needs to function well in order to be worthy, and that those people who take something out of that system are lazy, therefore denying oneself the help they need and overexerting oneself. What do these biases have to do with long covid recovery?
When it comes to treatment methods and perceptions of long covid recovery, healthism and ableism can lead to one becoming increasingly disabled and risk becoming bedbound. How so? Well, overexertion, whether physical or mental, during/after acute infection increases likelihood of developing and exacerbating long covid. However, doctors often still encourage graded exercise therapy (GET) for curing long covid and ME/CFS. GET is a type of treatment plan that includes increasing the amount of time physically exerting oneself to increase strength and recovery. This has since been debunked, and has been shown to actually exacerbate long term symptoms that can lead to people becoming bedbound, though it continues to be self prescribed, encouraged online, or suggested as a treatment plan by doctors. Many people newly disabled with long covid push the damaging rhetoric of “pushing through” their long covid or ME/CFS because they “used to be athletic and therefore should be able to rise back to that level of physical performance”. This is not only detrimental to these individuals’ health, it also puts the entire disabled community at risk of facing healthism from doctors and the general public, especially those with ME/CFS and other incurable chronic illnesses at risk of being judged for not trying hard enough when it’s scientifically proven that trying harder is actually more detrimental than not trying at all. This overall medical malpractice and widespread public bias has become highlighted by the pandemic, but has existed long before long covid was in existence.
In addition to lack of awareness of the danger of current public health policy and practices, people have become pandemic fatigued. They’re often numb to or unaware of the rate at which deaths are happening due to lack of transparency from the CDC as well as lack of the intense level of media coverage that we saw in early 2020. This has resulted in the general public becoming lax about preventative practices that are as essential now as they were earlier in the pandemic. Many people who once masked, tested, and stayed home have given up on precautions because they feel that Covid really is inevitable and that they must “learn to live with the virus,” and “get back to normal.” By resigning to the status quo, people forget the power they have to resist government policies and still mitigate the worst outcomes even in the most desperate of situations as part of their commitment to personal and community accountability.
Along with this nihilism and preemptive defeatism, the public has been duped into believing that viruses naturally become more “mild” over time and that Covid is “endemic.” This is incorrect for two reasons: 1) there is no evolutionary pressure for Covid to get milder. Think of other viruses like the plague and ebola that have not gotten milder over time. It is simply not how pathogen evolution works. And 2) There is reason to believe that Covid may not become endemic, but even if it does, that does not mean the overall situation is better or that people are no longer at risk of Long Covid or deaths because of Covid. To accept endemicity is to accept a smaller subset of people dying and becoming disabled, and somehow any amount of deaths or risk is acceptable, especially since the people most affected by endemics will be immunocompromised. As Raina MacIntyre, epidemiologist and Professor of Global Biosecurity at the Kirk Institute in Australia, says: “Covid will never be endemic. Covid is an epidemic disease. It will always be an epidemic disease because of the feature of the virus itself...There is no living with Covid in an unmitigated fashion. We need vaccines and public health measures to control it.”
Unfortunately, the Covid-19 pandemic has been characterized by misinformation flourishing in online spaces and was fueled by anti-vaccination sentiment and ideological conformity with ableist, capitalist, individualist worldviews nurtured by American culture. Even more infuriating is the poor communication of risk between health authorities and the public. So if the CDC has misled the public so much and therefore ultimately failed at effective public measures to protect us, where do we turn for well researched, science backed information to inform us on safe pandemic living? We turned directly to clinical scientists and research publications. Normally, many of these publications are inaccessible because of a paywall and because of the scientific language used. Additionally, they’re all written in English. This is why we felt it was essential for accessibility to summarize their points here for those who may not have access to these resources. Interestingly, the majority of the scientific articles we cite in this article are open access, meaning they were not hidden behind a paywall. Why is this important? More and more research articles are being published as open access now, meaning anyone can access them without needing institutional access or paid subscriptions to journals to access research on the emerging viruses. Much of this open access research publications are stating facts that directly contradict or refute CDC and WHO guidance, which implies scientists and doctors are attempting to circumvent the traditional publishing paywall for readers to be able to get well researched, peer reviewed information to fight misleading guidance from these major health institutions.
It is a privilege for us at XSP to be able to have the time and resources to research these scientific publications. We encourage people to contact us at (912) 994 - 0368 with any questions or topics you would like us to address through summarizing research as we have done in this episode, or through contacting other public health experts. Despite our dire situation and grim news, we hope this episode has encouraged you to think more critically about the actions we can take to protect ourselves and our community including minimizing non essential activities and masking. When we do need to go into public, masking is a must. Numerous studies have proven the superiority of universal masking as opposed to one-way masking, including one that found that the risk of infection is 0.4% after 1 hour of speaking at close-range if both susceptible and infected wear a well-fitting FFP2. By masking, we can contribute to protecting ourselves, our family, and our community.
Article 19 of the United Nations’ Universal Declaration of Human Rights states that “the fundamental right of freedom of expression encompasses the freedom to seek, receive, and impart information and ideas through any media and regardless of frontiers.” We strongly believe that this information that has previously been withheld from us is a violation of our human rights, and something we wish to combat through timely, accessible resources. This episode is part of our contribution to community care for our listeners and the Chinese American community where our healthcare system and government has failed in protecting our rights.