Full video: https://youtu.be/pR6GoPogTwM?si=XP6COp3P3EXR4FcW
(almost verbatim)
Slide 1
Slide 1 Description: The title slide says "ethics in long covid research design" in blue and purple colored font. Underneath it says V. Copeland, Ph.D, MSW with input from Catherine Romatowski and individuals in the tired and wired and recover representative groups.
Audio transcription: Hello my name is Victoria and I wanted to thank the organizing team for inviting me to speak today. Im a policy researcher and social worker with a PhD and masters degree and I’m here today to share some points for reflection from myself and other people with severe manifestations of long COVID. Thank to Catherine and the other groups for feedback on this presentation.
Slide 2
Description: The title says Stats in purple font. On the side there are citations. The stats are as follows:
Citations:
Audio transcription: Today I’m talking about clinical long COVID research and post exertional malaise. For those new to the term, pem is often defined as the prolonged worsening of symptoms following exertion whether that exertion is physical or cognitive. This is not just a form of exercise intolerance. It a serious adverse reaction to exertion and a serious condition. Pem can be temporary but it can also cause permanent worsening of one’s condition. Symptoms can include: syncope, seizures, severe. Neurological disturbances, excruciating pain and muscle weakness, nausea, and extreme sensory sensitivity. According to the research pem was found to be one of the most frequent symptoms following a COVID infection, with patients even reporting pem three years post acute infection. So Why is this important?
Slide 3
Description: title says Stats "Inclusion in Long covid trials" in blue and purple font. Under the title it says who are we missing? And why does it matter? To the side is a rectangle with three parts. At the top of the rectangle is a green box that says no PEM, accessible. Beneath is a yellow box that says moderate PEM. Access considered. PEM inevitable byproduct. Beneath is a red box that says severe PEM. No access, non inclusion. On the side of the rectangle is text that's says this image os a hypothetical and not based on any research. The bottom of the slide is a citation box: https://www.mdpi.com/2075-4418/9/1/26.
Audio transcription: Well if we know that many people with long COVID also experience pem it’s very important that we take this into account when designing research. this should not be just an afterthought for researchers but should be considered and planned for when designing trials from their conception. one study shows that 67% of people with Myalgic Encephalomyelitis report crashes that never resolve. And this is vital information to know as we craft new clinical research.
Here I’m highlighting that people with severe pem, meaning they rarely leave their homes or beds, are often fully excluded from trials. Further, upon hearing testimony from people who have pem but are not fully home or bedbound, they also have to expect pem as an inevitable byproduct of participating in a clinical trial. Although access may be briefly acknowledged by researchers, it is not baked into the research design and thus people with moderate pem risk permanently worsening just to participate in a trial and potentially be helped.
If people with long COVID and severe PEM are largely stuck in their homes or beds and excluded from trials, is the long COVID research as it stands representative of the full population of people with long COVID? If not what and who are we missing? Further, is it ethical to knowingly conduct trials that may cause long term health consequences ?
I pause here to acknowledge that Of course this is a difficult discussion to have. many patients fear speaking up for fear of losing the ability to participate in a trial and others fear that they cannot speak up about accessibility when there’s so much political pressure and controversy around funding long COVID research in general. Patients with severe pem are stuck between a rock and a hard place. And I know some researchers are trying their best to navigate this contentious landscape.
Slide 4 and 5
Description: Just text below. Citation box to the side:
Audio transcription: But this is still important for us to figure out. I wanted to take us back to the Belmont report. If you have a doctorate you have heard of this before but for those who may not know, in response to the violence of the Tuskegee experiments, the National Research Act of 1974 was passed and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was created. The Belmont report came from this commission in efforts to set guidelines for research involving human subjects.
One of the three ethical principles in the report is beneficence. Under this principle it states that:
"Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being"
"…beneficence is understood in a stronger sense, as an obligation.”
(1) do not harm and (2) maximize possible benefits and minimize possible harms."
Additionally it states that:
“investigators . . . are obliged to give forethought to . . . the reduction of risk that might occur from the research investigation”
“Risk can perhaps never be entirely eliminated, but it can often be reduced by careful attention to alternative procedures.”
I bring up this point to say that it is not just medical doctors who are responsible for upholding just and equitable care for their patients, but also researchers who are obligated to ethically navigate the risks and benefits of all research involving human participants.
This is not to say that trials should not be happening, but that we may need to become creative about the ways we engage in these trials, as we are dealing with a population of people who are incredibly ill and vulnerable to worsening without proper care.
Slide 6
Description: The title says prioritizing the individual. There's a picture in the center of an unbalanced scale with the left heavier than the right. To the left is text that's says: planning for confounding variables, internal and external validity, and finding constraints. To the right is text that says planning for: well being of trial participants, long term health impact.
Audio transcription: And yes of course this does not happen in a vacuum. It’s important for us to remember that researchers have to contend with planning for confounding variables, and the validity of findings. However we also have to weigh the well-being of patients which is what beneficence is pointing too. I have been on a call before where researchers were saying they cannot provide certain accessibility measures due to potentially muddying the data. However we also need to back these claims with science.
To what extent will providing access impact the validity of the findings? Is that reduction in validity (either potential or proven) worth potentially disabling a participant by causing repeated or prolonged pem? These are the questions I am hoping researchers sit with.
Slide 7 & 8
Description: Just text as below. The title says beneficent action.
Audio transcription: Here are some ways that patients have expressed we can reduce pem in trials.
Reducing exertion:
More capacious framework for time allotment, while acknowledging trial urgency. Here this is speaking to the need to understand that people with pem need more than one or two days for testing. Making patients choose between a 5-6 hour day of testing or two days of 3-4 hours of testing each may not actually be ethical when we are speaking of people with moderate or severe PEM. That is because even an hour of testing can cause a severe episode of pem. Several hours and back to back days both have ramifications on ones well-being that should be considered.
Use of mobile phlebotemy and at home tests and Requiring PPE at testing sites, and proper ventilation. I am shocked that it has to be stated so often but Infecting someone with COVID at a long COVID trial is just extremely offensive and violent and should not be happening. Providing lists of community resources upon visit. Multiple versions of consent, including plain language, written, and spoken prior to visit. Compensation for least exertional transport to site whether train, rideshare, gurney or wheelchair.
Slide 9
Description: Slide says thank you for watching and listening.
Audio transcription: I hope these questions and points raise some discussions about making more ethical trials and thank you for your time.
Trapped in the Digital Poorhouse: On misogynoir, mandatory reporting, and Myalgic Encephalomyelitis
V. Copeland, Ph. D, MSW
“Whether the Jezebel, mammy, Sapphire, and later the “welfare queen” or even the “strong Black woman” archetype, misogynoiristic portrayals of Black women shape their livelihoods and health. . . . Misogynoiristic caricatures materially impact the lives of Black women by justifying poor treatment throughout all areas of society and throughout US history.” – Moya Bailey[1]
“I imagine an African American mother of three who has worked two jobs to be sure that her family is well cared for, who suddenly is too sick to work at all and can find no explanation. . . . There are thousands of stories just like these. They deserve the strongest effort from their government to refute the image of ME/CFS as a "white person's disease" and to guarantee them a correct diagnosis. I will never stop fighting for this to happen.” -- Wilhelmina Jenkins[2]
I believe that I am coming around the bend. My limbs no longer feel like they are being pressed down by iron weights, unable to budge regardless of any whispered prayer or herculean physical effort attempted. During these episodes, otherwise called Post-Exertional Malaise or PEM (Grach et al., 2023), the only thing I can do is surrender into the heaviness and lie still for hours. I am lucky. I had not had an episode like this in months. In fact, I considered myself to be significantly improved from the state I have been in for the past three years, where many days I could not lift my own head. As I slowly make my way out of this latest severe episode, I try my best to ignore the deep-seated fear that I am permanently worsening. Instead, I find myself internally repeating “take it one day at a time”. Although these self-talks help to maintain stability in my mental health (as it is so easy to be hampered down by self-blame), they do little to take away the physiological pain and fatigue that so considerably impact me during an episode of PEM. This is my plight and my curse as someone with Myalgic Encephalomyelitis “MECFS”.
Stress, is what spurred this latest regression. Last week an Adult Protective Services or "APS" investigative worker came knocking on my door for an unannounced visit, just two business days after a slew of questions were sent to me from my In-Home Supportive Services “IHSS” worker from the Orange County Social Services Agency. The questions were so plentiful that I had to ask the worker whether his interrogation was due to some trouble I may be in with the county, to which I wasn’t aware. Based on my own experience with Child Protective Services, I knew that questions from county agencies were seldomly innocuous. Although he replied hastily with “no you’re not in trouble 😊”, just a few days later an investigatory worker came knocking on my door on the grounds of self-neglect. This started a torrential downpour of fear, anxiety, and confusion within me. Although they were not granted access, they said they’d be back. I immediately went into crisis mode, contacting all the attorney colleagues I knew and every legal aid center I could find. Because I am privy to these institutions as a social worker myself, I also consulted the Welfare Institutions Code and APS handbook. Though filled with trepidation, I knew I had to understand my rights.
The mental and physical energy I expended for a week straight on this sapped the few available energy reserves I need to survive every day. Rather than taking care of my needs, I spent my mitochondrial capacity sending emails, filling out online requests, and waiting on hold through my IP Relay app that frequently disconnects service. This required all of my limited energy reserves. As someone with severe MECFS, being able to prepare my own food, eat, and bathe myself is a privilege. The APS report and subsequent investigation was not only unnecessary and traumatic, it also made me feel significantly worse in every way.
Now that the coast is temporarily clear and I am not in imminent threat of caseworker surveillance, I can finally breathe and ask myself the many questions plaguing my mind. Some of these questions I will get into in the later parts of this piece, as many require a review of some key theoretical frameworks and terms including ableism (Lewis & Yancy, 2023), racism (Gilmore, 2007), misogynoir (Bailey, 2021), “matrix of domination” (Collins, 1990), organized abandonment (Gilmore, 2007), and extractive abandonment (Vierkant & Adler-Bolton, 2022). My intention in writing this piece is to better explore the ways in which various ideologies impact the care economy, and how these ideologies lead to a direct and significant impact on our social institutions, communities, and experiences as individuals.
Although my race, gender, income status and ability may not have directly or intentionally led to the specific APS report recounted above, the creation of a process that requires intrusion and surveillance to access “care” means that “care” is deeply steeped in logics of carcerality and eugenics. Consequently, we have come to know that the care economy is influenced by racialized, gendered, ableist ideas about safety, risk, and health. Mandatory reporters, like the one who presumably reported me, do not operate in a vacuum. Under capitalism and thus organized abandonment “care workers” become agents of the state who depend on the utilization of carceral tactics to dispense “services”. Care workers turned data workers, operate under a constant sense of manufactured scarcity, the idea that as a society we have few resources meaning we must surveil applicants and recipients of services to ensure that those who do qualify for government support are both worthy and compliant. This is not new, but an extension of the intrusive and violent tactics of surveillance that black, disabled, and otherwise non normatively classified individuals have experienced for generations (Browne, 2015; Gustafson, 2011).
Neither is this a simple, micro-level personal issue between me and the county. Caregivers registered with IHSS remain a largely low-income woman of color base of migrant workers that are underfunded and under protected. Registered care providers are burnt out, taking care of their own families, and being run out of the country by Immigration and Customs Enforcement or “ICE” and Border Patrol. The reduction in already sparsely available caregivers has led to an inability for me to find stable caregiving through the county, which resulted in a subsequent report made to APS for “self-neglect” due to lack of stable caregiver. This is a clear example of how the expansiveness of what I call the carceral ecosystem – a framework that helps describe systemic issues of caging and categorizing people, impacts all parts of society from labor to childcare, to healthcare and domestic care. In these pages I will discuss how logics of carcerality and eugenics influence the care economy, including how it impacts both individual and institutional capacity to provide “care”, and how the care economy under capitalism is turned into a data economy in which care laborers like caseworkers and social workers become responsible for the collection, sharing, and use of data rather than the “care” most needed by our communities. Under capitalism prominent sectors of “care labor” become data labor, which necessitates a closer look into the ways data is extracted from and used to harm specific people, all in the name of care. To this end, I also use the term “digital poorhouse” by Virginia Eubanks (2018) to underscore the intentional and specific targeting of low-income communities.
References
Bailey, M. (2021). Misogynoir Transformed: Black Women's Resistance. NYU Press.
Browne, S. (2015). Dark Matters: On the Surveillance of Blackness. Duke University Press.
Collins, P.H. (2000). Black Feminist Thought. Routledge.
Eubanks, V. (2018). Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. Macmillan.
Gilmore, R.W. (2007). Golden Gulag. University of California Press.
Grach, S.L., Seltzer, J., Chon, T.Y., Ganesh, R. (2023). Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Concise Review for Clinicians, 98(10). https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext.
Gustafson, K.S. (2011). Cheating Welfare: Public Assistance and the Criminalization of Poverty. NYU Press.
Jenkins, W. (2019, April 15). Unseen: Black People Living with ME. ME ACTION. https://www.meaction.net/2019/04/15/unseen-black-people-living-with-me/
Vierekant, A. & Adler-Bolton, B. (2022). Health Communism. Verso.
Yancy, G. & Lewis, T.A. (2023, Jan 8). Ableism is the Driving Force Behind All Forms of Incarceration, Says Abolitionist Talia Lewis. Truthout. https://truthout.org/articles/incarceration-and-ableism-go-hand-in-hand-says-abolitionist-talila-lewis/
(Excerpt from book draft, copyrighted)
During grad school my medicaid was denied. After months and months of no insurance i finally got a court date, the final level of appeals. At the appeal i asked the judge where all of my sensitive documents went, he said "good luck finding that out". My experiences as a consumer of social services played a huge role in my interest in social services/data during graduate school.
In the U.S. we have normalized the unregulated use, storage, & sharing of data to the point that handing over a multitude of sensitive documents to a caseworker has become unquestionably normalized. Agencies retaining data for decades is normalized. It is near impossible for a consumer to track where their documents are and who has their eyes on them. This is because biocertification has become embedded into the social fabric of our society. Caseworkers are often caught in the middle of this. The push to automate and "AI"ify (see budget reconciliation bill) decision-making processes for "efficiency" make the work of caseworkers more difficult and more precarious, not the other way around.
Pouring $500billion into data infrastructure will make them more efficient yes, but not in the ways that workers OR consumers need. What will happen? We have seen it before. More cases will be erroneously flagged for case closure, more humans will have to fix these errors. More appeals will back up the system. In accordance w/ the budget reconciliation bill and the provisions to increase the frequency of verification's and add work requirements, more doctors will have to spend time going through documents, and more caseworkers will have to increase their already burdensome caseloads.
Many proponents of AI try to convince the masses that automated decision-making is both inevitable and immensely helpful. But in the realm of social-services-under-capitalism, they are first and foremost biocertification tools that operate under eugenic logics. They perpetuate the stratification between the undeserving and deserving poor simultaneous to extracting labor from the working surplus (including caseworkers who largely work low wage labor). They make life so very difficult for so many low income consumers and workers.
Right now I am trying to meaningfully write about the proposed changes to the ACF - Administration for Children & Families written in Pr*ject 2025. I have found it difficult to articulate how often misogynoir is at the root of policy changes that specifically target the broader trans community. The hatred of Black people and specifically Black women specifically has been a driver for government policy, the paradigms in Pr*ject 2025 are a recapitulation of what we already know. I do not believe you can or should fight for trans rights without fighting against anti-Blackness. They have always intersected.
As Spillers states,
“Under these conditions, we lose at least gender difference in the outcome, and the female body and the male body become a territory of cultural and political maneuver, not at all gender-related, gender-specific. But this body, at least from the point of view of the captive community, focuses a private and particular space, at which point of convergence biological, sexual, social, cultural, linguistic, ritualistic, and psychological fortunes join. This profound intimacy of interlocking detail is disrupted, however, by externally imposed meanings and uses…”.
C Riley Snortons conversation with Spillers work, and their focus on “uncensored flesh” is what I am currently diving into so that I can better appreciate and articulate this discourse around gender fluidity, racialization, and the mechanisms of upkeeping a captive flesh via policing.
Digression aside, I say that Project 2025s aims are a recapitulation, due to the lineages of suffering that stemmed from the transatlantic slave trade, much of which we already experience - including that which has flourished from the seemingly mundane (to non Black folks) policy changes of the 60s, 80’s, & 90’s.
Right now I am honing in on the 60’s — a time when in response to desegregation jurisdictions, particularly in the south, were attempting to creatively destabilize the Black family by instituting several new criminalization measures/tactics, ie: diminishing ADC access by deploying suitable housing & parenting requirements which were enforced by welfare workers via raids. Too many Black women on AFDC meant having to find new ways to kick them off it. The focus on waste and fraud became more prevalent and necessary to uphold the white supremacist order. Segregationist, in retaliation to the freedom rides, pushed Black women out of their cities by claiming they were lazy, aid-dependent, & draining the community. Moynihan's cementing of this discourse in “tangle of pathology” paved the way for Reagan’s obsession with Linda Taylor & the welfare-queen-dramatics-turned-full-fledge-policy-agenda. The goal was and continues to be domination of the white cis-nuclear family, & anti-Black racism drives this.
As evident in Pr*ject 2025, there is still an effort to solidify this image of what is a “healthy”, normative, “productive” family. As this posts describes, this has been the case decades prior to Trumps second election. It has surfaced in significant ways locally. In my dissertation work I found that Los Angeles, as of 2020, has had a “red flag” warning for mothers who have a boyfriend living in their home . This red flag was suggested by the LA Civil Grand Jury. Single Black and Latine mothers in LA talk about experiencing this in real time through additional surveillance from caseworkers and even having to sit through interrogations abut their sex life — as teenagers. I have no doubt that this has been occurring throughout the country.
But why is this all important to remember now? Because solidarity and cross movement organizing is what is going to keep us alive. Back when legislation passed in Florida to criminalize gender affirming care, making it a reportable crime by child maltreatment agency workers, caseworkers stepped up to outright refuse to comply. But once legislation started to change for the better, those caseworkers went back to business as usual, dismissing all of the presently-normative ways that they still harm of the youth in the system. It is this way because these youth are disproportionally Black. Even if they are trans, they are seen as Black first, making their suffering less critical and urgent. In 2025 we have to care about Black liberation, even when it’s not convenient.
My first pitch since 2021 was just published by the Forge! This piece was inspired by my friends with Myalgic Encephalomyelitis who have expressed feeling left out of post-election organizing spaces due to inaccessibility. I love you all and am so grateful to have the support from such a loving community. This piece is about grief, severe disability, and community.
If you're seeing this, I am on a medical break due to a procedure planned on Monday 2/24. Keep me in your prayers as I navigate a crucial month (including possible biopsies in March) for medical care.
luv,
v
