What would follow would prove to be, in short, exactly what we anticipated.

The COVID-19 pandemic was framed as a “Biden/Fauci” problem (though it began during Trump’s first administration,) resources and funding that previously went towards Covid prevention and tracking on both the local and national level were cut, and the HHS/CDC/NIH/FDA were turned upside down by Trump’s appointment of RFK, Jr. as head of Health and Human Services. Access to COVID vaccines became restricted. Though RFK Jr. claims that “anyone who wants one” can get a vaccine, the reality is that this is a LIE - often times Americans are faced with the burden of paying out of pocket for the vaccine, making them inaccessible to many, especially those in lower income areas who are at higher risk of infection due to community spread.

As we head into November, due to the current Government shutdown (caused by Republicans refusing to extend healthcare subsidies which will result in everyone’s healthcare increasing in cost, and some exponentially so,) SNAP benefits are on the brink of being shut off. Americans who rely on SNAP benefits are being told to start purchasing non-perishable items, and are being instructed to find their local food pantries to help them get by during a time when food access will be limited.

Typically, I’d anticipate writing at length about how we got to this point and what the implications of the government shutdown are for both public health and food insecurity. However, over six months ago I began writing an article that should have been published in a timely manner. That article, covering the “Lab Leak” website which replaced COVID.org, sits on my hard drive unfinished - and it’s a prime example of what living with severe Long Covid has looked like for me.

Something that should have taken a matter of days or a weekend to write has taken over six months to get to its current, unfinished state. While I am saddened that it’s incomplete, I simply don’t have the energy to work on it further. In fact, I don’t have energy to give to anything that isn’t a top priority for my life: getting out of bed, showering, brushing my teeth, putting on sweats, eating, responding to texts from friends, and joining a virtual zoom from my iPad in bed or on the couch.

If I am fortunate enough to have any energy left over, I can spend time with my husband, read a few chapters of a book, or rewatch an episode of a TV show. It’s been over a year since I last played a video game, listened to new music, or went to a movie. Most of my writing has been 10-minute “Micro” prompts or short journaling prompts. My time is made up of fragmented pieces of the things I used to enjoy.

As I again face the limits of my energy and abilities (as this has been a continual process since becoming disabled, and as my illness continues to worsen,) I have been brought back to consider this Substack time and again. It began as something I thought would inspire me to write more. Instead, the site has been a source of sadness, showcasing how difficult writing with frequency and with the quality I strive for has become. I am unable to post in a manner that makes it feel successful and a worthy use of my time. The importance of setting realistic expectations for my energy has never been more evident, and the activities I am continually failing to manage are ones I must let go of.

When I began this Substack, I wanted to highlight what life looked like as someone who is newly disabled against the backdrop of an ever-changing American political landscape. While this is important work,

1. I’m not the only person writing about this

   » There are many, many disabled creators speaking on the same topics, as well as non-disabled creators who are in the epidemiological space. I will link some at the bottom of this post.

2. People with the privilege of health need to begin to step up and take on this work instead of those of us who are sick bearing the burden

   » The disability community is the only marginalized group of which everyone will become a part of someday if they live long enough. If you live long enough, you will become disabled. The ableism of excluding disabled people from social justice work impacts us all.

3. I need to take care of my health first

   » Recently, I’ve taken more of a step back from as intensely engaging in and following politics as I have in the past. Long Covid has caused cognitive damage such as brain fog, poor short term memory, and increased symptoms of ADHD, OCD, and depression. Focusing less on stressful subjects such as politics has helped to alleviate these symptoms.

While I may be ending future posts to this Substack, and thus (yet again) another foray into trying to stake my claim in the online sphere, I will continue to engage in the creative spaces I love, finding a framework that is accessible despite my physical limitations. It is my goal to eventually have a space to share my writing, art, and crafts, in a way that will fit within my fluctuating energy envelope.

Thank you to everyone who has taken the time to read, share, and interact with the posts here. I hope that you learned something from our time together on this site and that you are a bit more aware of the need for disability justice and equity, and the continuing threat of COVID-19.

In order to fully understand the scope of what’s happening, we’ll cover the differences between the NIH, the CDC, the FDA, and ACIP, and then recap what got us here.

What’s With All the Acronyms? The NIH, CDC, FDA, and ACIP

The Department of Health and Human Services oversees multiple organizations, including:

• US Centers for Disease Control and Prevention (CDC)

  • The national public health agency of the United States, “CDC is the nation's leading science-based, data-driven, service organization that protects the public's health.” (via CDC website)

• The National Institutes of Health (the NIH)

  • “The National Institutes of Health (NIH) is the primary Federal agency for conducting and supporting medical research.” (via NIH website)

• US Food and Drug Administration (FDA).

  • “The Food and Drug Administration is responsible for protecting the public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices; and by ensuring the safety of our nation's food supply, cosmetics, and products that emit radiation.” (via FDA website)

• The Advisory Committee on Immunization Practices, or ACIP

  • “The Advisory Committee on Immunization Practices (ACIP) is a group of medical and public health experts that develops recommendations on how to use vaccines to control diseases in the United States” (via CDC website.)

  • These members traditionally have experience in virology, immunology, pediatrics, and internal medicine.

  • ACIP is a federal advisory committee which provides its recommendations to the CDC, operating under the oversight of the Department of Health and Human Services.

The Department of Health and Human Services falls under the direction of the Office of the Secretary, Robert F. Kennedy, Jr.

Okay - So, How Did We Get Here?

Critics of Robert F. Kennedy, Jr. feared that one of his first priorities as Director of HHS would be to limit vaccines. Kennedy has demonstrated a long history of anti-vaccine beliefs as well as supporting conspiracy theories and medical misinformation. During his confirmation hearings, much of the questioning was focused on whether or not these problematic beliefs would influence his decision making. Unfortunately, those who were concerned were right to be.

Timeline:

• May 19th, 2025: The FDA pledges to release a “massive framework” for the testing and approval of vaccines according to Commissioner Marty Makary.

  • The plan is being spearheaded by the agency’s new vaccine chief, Dr. Vinay Prasad, a loud critic of the FDA’s management of COVID-19 boosters.

• May 20th, 2025: Dr. Prasad releases “An Evidence-Based Approach to COVID-19 Vaccination” to the New England Journal of Medicine.

  • It states the FDA will require pharmaceutical companies to perform new, random-placebo clinical trials in healthy people ages 50-64. The trials may need to be repeated for future approvals.

  • The guidance was released in a medical journal without the option for public comment, which could violate Federal procedures (AP News.)

• May 27th, 2025: RFK Jr. announces via Twitter/X that the CDC will no longer recommend the COVID-19 vaccine for pregnant people nor healthy children.

• May 29th, 2025: The CDC changes its recommendations for children to shared decision making between doctors and parents for children aged 6 months - 17 years who are not moderately to severely immunocompromised.

• June 9th, 2025: RFK Jr. removes all fifteen members of ACIP and replaces them with his own appointees, including known anti-vaccine proponents.

  • Widespread criticism of the eight newly appointed members includes claims that many are unqualified, are noted critics of the United States’ COVID pandemic response, and are known for advocating against childhood vaccinations.

• June 16th, 2025: Vaccine advisors removed by RFK Jr. from ACIP warn that the overhaul has “left the U.S. vaccine program critically weakened.”

• July 25th, 2025: The American Academy of Pediatrics recommends that all young and high-risk children be vaccinated against COVID-19, diverging from CDC policy for the first time in history.

• July 30th, 2025: RFK Jr. states that he will “fix” the vaccine court on Twitter/X, claiming the National Vaccine Injury Compensation Program is corrupt.

• August 5th, 2025: RFK, Jr. announces that the HHS will terminate 22 mRNA vaccine projects and almost $500 million of funding through BARDA (the Biomedical Advanced Research Development Authority.)

• August 8th, 2025: The CDC offices are attacked by a gunman who shot more than 500 rounds of ammunition into the main campus’s buildings, killing employee David Rose and then himself.

  • Per Atlanta News First, the shooter believed the vaccine had injured him and was harming others.

• August 20th, 2025: CDC employees sign an open letter to RFK, Jr., stating that he is complicit in “dismantling America’s public health infrastructure and endangering the nation’s health.”

• August 22nd, 2025: The American College of Obstetrics and Gynecologists release their recommendations on the COVID-19 vaccine, strongly recommending all pregnant or lactating people are vaccinated against COVID-19.

• August 25th, 2025: CDC appoints MIT Professor Retsef Levi, an anti-vaccine skeptic without biomedical or health expertise, and with a history of alarmist positions on mRNA COVID vaccines, to lead its COVID-19 Immunization workgroup.

• August 27th, 2025: the FDA authorizes the 2025-2026 updated COVID-19 vaccinations. This is the first time in history that the FDA has strayed from the recommendation of major medical organizations.

• August 27th, 2025: CDC Director Susan Monarez is fired by the White House, stating that she was not “aligned with” Trump’s agenda.

  • Lawyers for Monarez responded in a statement, claiming she was targeted as a result of standing up for science and choosing to protect the public over political agenda.

  • At least four other top personnel at the CDC resigned in protest of its changes and RFK Jr’s lack of leadership: Dr. Debra Houry, Dr. Daniel Jernigan, Dr. Demeter Dasakalakis, and Dr. Jennifer Layden.

    See Dr. Dasakalakis’s resignation letter on Twitter here, or on my prior post here.

Below Are the FDA’s 2025-2026 COVID-19 Vaccine Authorizations:

• Pfizer-BioNTech “Comirnaty” (FDA approval page here):

  • 65 years and older, or between 5-64 years old with at least one underlying “high risk” condition

• Moderna “Spikevax” (FDA approval page here):

  • 65 years and older, or 6 months to 64 years old with at least one underlying “high risk” condition

• Moderna “mNEXSPIKE” (FDA approval page here):

  • 65 years and older or 12 to 64 years old with at least one underlying “high risk” condition

  • Not approved for those 11 years old and under

• Novavax “Nuvaxovid” Approval (FDA approval page here):

  • 12 years and older with at least one underlying “high risk” condition

High Risk, Low Risk… What Does it Mean?

The CDC’s two lists of high risk for complications to COVID-19 can be found here.

Can I Still Get the Vaccine if I’m Not High-Risk?

A doctor can administer the vaccine or write a prescription for one “off label,” which means beyond FDA approval, for use at a pharmacy. However, some doctors may feel uneasy prescribing in this way, and pharmacists may be unable to administer them due to liability issues or state law.

So What Happens Next?

First… enter ACIP and the CDC.

As mentioned, ACIP advises on how to best use vaccines to control disease in the United States. The CDC adopts ACIP’s recommendations into policy once approved by the CDC’s director. Among the many impacts that ACIP’s recommendations have, they include the administering of vaccines in pharmacies, and determining coverage by insurance companies.

According to the CDC’s website, ACIP will meet again September 18th-19th and is expected to provide its’ vaccine guidance at that time. However, the Chair of the Senate Committee on health, Senator Bill Cassidy (R-LA), a notable proponent of vaccines, has called for the meeting to be postponed in light of recent high-level departures at the CDC.

Once ACIP and the CDC formalize their recommendations, we will know who will be able to get a vaccine at pharmacies throughout the US (with and without a prescription,) and insurance companies will determine their coverage, including Medicare and Medicaid.

Will My Insurance Cover the Vaccine Cost?

Federal law requires private insurance companies to cover the cost of vaccines recommended by ACIP, with Medicare and Medicaid generally covering those vaccines as well.

According to ABC News, private insurance providers have suggested they may continue to cover the cost of the vaccines for all members, even if they are not recommended by ACIP. Per Tina Stow, spokesperson for America’s Health Insurance Plans:

It may be in insurance companies’ best interest to cover the COVID-19 vaccine, regardless of ACIP’s recommendation, as it has been proven to lower the rate of serious illness, hospitalization, and death. The only major insurance company to already confirm that it will continue to fully cover COVID-19 vaccines is Kaiser Permanente.

Without insurance the current CDC price list shows the adult Spikevax (Moderna) dose at $141.80 and Comirnaty (Pfizer) at $136.75 in the private sector.

Getting Vaccinated at Your Pharmacy? Your Ability May Vary.

In 2024-2025, the majority of Americans received their vaccinations from pharmacies. In prior years, vaccines were available to anyone 6 months of age or older, regardless of health. With the new restrictions, there are caveats to getting vaccinated at a pharmacy, which vary by state. (These do not apply to being vaccinated in a doctor’s office.)

1. A pharmacist is not able to administer vaccines for an “off label” prescription in the following states: Colorado, Connecticut, Georgia, Iowa, Kentucky, Maine, Maryland, Massachusetts, Montana, Nevada, New Jersey, New Mexico, North Carolina, Oregon, Pennsylvania, South Carolina, Virginia, Washington, D.C., and West Virginia.

2. Certain states require all patients obtain a prescription in order to be vaccinated by a pharmacist, regardless of being under ACIP/CDC recommendation or not. Those states include: Arizona, Colorado, Florida, Georgia, Kentucky, Louisiana, Maine, New York, North Carolina, Pennsylvania, Utah, Virginia, Washington, D.C., and West Virginia.

3. There is overlap between the two groups, meaning that in the following states, you must qualify for vaccination as recommended by ACIP/the CDC and have a prescription in order to be vaccinated at a pharmacy: Colorado, Georgia, Kentucky, Maine, North Carolina, Pennsylvania, Virginia, Washington, D.C., and West Virginia.

As reported by ABC News, Brigid Groves, the vice president of professional affairs at the American Pharmacist Association, stated:

ABC News also reported that Amy Thibault, a spokesperson for CVS - the nation’s largest pharmacy chain - confirmed that it will not be administering shots in three states: New Mexico, Nevada, and Massachusetts, due to “the current regulatory environment.”

…This Is Going to Make It Harder to Get People Vaccinated, Isn’t It?

Though the Trump administration asserts that “100% of adults in this country can still get the vaccine if they choose,” according to FDA Commissioner Marty Malari on X. That is a bold statement not taking into consideration access and cost - especially for those in underprivileged areas where COVID hits hardest.

White House press secretary Karoline Leavitt, per ABC News, commented:

"The FDA's decision does not affect the availability of COVID vaccines for Americans who want them […] That's a promise both the president and [HHS Secretary Robert F. Kennedy Jr.] have made.”

In reality, multiple barriers now exist as a result of the administration’s changes to vaccine approvals. There is widespread confusion around the new policies, fear and uncertainty from doctors and pharmacists potentially defying federal guidelines, increased patient costs, and possible loss of access through local pharmacies. In a country where less than 25% of adults were vaccinated against COVID in the 2024-2025 season according to the CDC, vaccination rates are feared to decrease even further.

Finally, Are COVID Vaccines Still Safe?

Yes. Stop asking.

For months, I have struggled with what to say about the complete failure that is RFK Jr’s appointment as secretary of Health and Human Services. Only seven months into the Trump presidency, our fears have come true: this anti-vaxx, anti-science, wellness grifter has shaped the US public health policy in ways that will directly cause needless serious illness and death.

There are voices other than mine you should be listening to: medical professionals and epidemiological experts, some of whom I’ve tagged at the end of this post. My comments on the actions taken by RFK, Jr. and his team are an echo of what disabled people have been saying for decades: our government and its health policies are failing us. Today, more than ever before, we are facing a healthcare crisis.

As Covid-cautious Americans and disabled people have personally done everything we can to remain protected against infection, safety measures such as masks and vaccines have been needlessly politicized. And now, the Centers for Disease Control and Prevention and the office of Health and Human Services’ leadership are actively working against the best interest of the American People. Every choice that has been made under the Trump administration in the way of health and public policy has been in service of abandoning those who need the protections supposedly afforded to them.

This morning, however, there is urgent new information I hope for as many people to read as possible.

In light of the resignations and removals that have occurred over the past 24 hours at the CDC, I want to highlight the resignation letter from Dr. Demetre Daskalakis, the now-former Deputy Coordinator of the White House National Monkeypox Response Team. This letter summarizes the grave failings of the current administration and outlines the many clear and direct ways Robert F. Kennedy, Jr. and his appointees at the Department of Health and Human Services are eroding public health in America. The actions taken by this administration are willfully neglecting the most vulnerable populations and will certainly lead to increased hospitalizations and deaths from COVID-19, five years after the start of the pandemic.

I urge you to call or write to your local representative and DEMAND THE IMMEDIATE REMOVAL OF ROBERT F KENNEDY, JR. AS HEAD OF HEALTH AND HUMAN SERVICES. You can find your representatives here and here.

In addition, consider downloading the 5Calls app, which has a pre-written script for this issue and will provide the contact information of your local representatives automatically.

Dr. Daskalakis’s resignation letter was posted on X (formerly Twitter), and like many of you I no longer have an X account, therefore am posting his resignation letter as it reads on August 28, 2025 at 8:50am PST in full below.

I urge all my readers to give this resignation letter your attention and to fully recognize the scope of what is going on at the CDC. Immediately following the letter, you can find a list of social media accounts and websites for some of the experts that I personally follow for updates on public health policy in America.

Read his full letter below:

Dear Dr. Houry,

I am writing to formally resign from my position as Director of the National Center for Immunization and Respiratory Diseases at the Centers for Disease Control and Prevention (CDC), effective August 28, 2025, close of business. I am happy to stay on for two weeks to provide transition, if requested.

This decision has not come easily, as I deeply value the work that the CDC does in safeguarding public health and am proud of my contributions to that critical mission. However, after much contemplation and reflection on recent developments and perspectives brought to light by Secretary Robert F. Kennedy Jr., I find that the views he and his staff have shared challenge my ability to continue in my current role at the agency and in the service of the health of the American people. Enough is enough.

While I hold immense respect for the institution and my colleagues, I believe that it is imperative to align my professional responsibilities to my system of ethics and my understanding of the science of infectious disease, immunology, and my promise to serve the American people. This step is necessary to ensure that I can contribute effectively in a capacity that allows me to remain true to my principles.

I am unable to serve in an environment that treats CDC as a tool to generate policies and materials that do not reflect scientific reality and are designed to hurt rather than to improve the public’s health. The recent change in the adult and children’s immunization schedule threaten the lives of the youngest Americans and pregnant people. The data analyses that supported this decision have never been shared with CDC despite my respectful requests to HHS and other leadership. This lack of meaningful engagement was further compounded by a “frequently asked questions” document written to support the Secretary’s directive that was circulated by HHS without input from CDC subject matter experts and that cited studies that did not support the conclusions that were attributed to these authors. Having worked in local and national public health for years, I have never experienced such radical non-transparency, nor have I seen such unskilled manipulation of data to achieve a political end rather than the good of the American people.

It is untenable to serve in an organization that is not afforded the opportunity to discuss decisions of scientific and public health importance released under the moniker of CDC. The lack of communication by HHS and other CDC political leadership that culminates in social media posts announcing major policy changes without prior notice demonstrate a disregard of normal communication channels and common sense. Having to retrofit analyses and policy actions to match inadequately thought-out announcements in poorly scripted videos or page long X posts should not be how organizations responsible for the health of people should function. Some examples include the announcement of the change in the COVID-19 recommendations for children and pregnant people, the firing of scientists from ACIP by X post and an op-ed rather than direct communication with these valuable experts, the announcement of new ACIP members by X before onboarding and vetting have completed, and the release of term of reference for an ACIP workgroup that ignored all feedback from career staff at CDC.

The recent term of reference for the COVID vaccine work group created by this ACIP puts people of dubious intent and more dubious scientific rigor in charge of recommending vaccine policy to a director hamstrung and sidelined by an authoritarian leader. Their desire to please a political base will result in death and disability of vulnerable children and adults. Their base should be the people they serve not a political voting bloc.

I have always been first to challenge scientific and public health dogma in my career and was excited by the opportunity to do so again. I was optimistic that there would be an opportunity to brief the Secretary about key topics such as measles, avian influenza, and the highly coordinated approach to the respiratory virus season. Such briefings would allow exchange of ideas and a shared path to support the vision of “Making America Healthy Again.” We are seven months into the new administration, and no CDC subject matter expert from my Center has ever briefed the Secretary. I am not sure who the Secretary is listening to, but it is quite certainly not to us. Unvetted and conflicted outside organizations seem to be the sources HHS use over the gold standard science of CDC and other reputable sources. At a hearing, Secretary Kennedy said that Americans should not take medical advice from him. To the contrary, an appropriately briefed and inquisitive Secretary should be a source of health information for the people he serves. As it stands now, I must agree with him, that he should not be considered a source of accurate information.

The intentional eroding of trust in low-risk vaccines favoring natural infection and unproven remedies will bring us to a pre-vaccine era where only the strong will survive and many if not all will suffer. I believe in nutrition and exercise. I believe in making our food supply healthier, and I also believe in using vaccines to prevent death and disability. Eugenics plays prominently in the rhetoric being generated and is derivative of a legacy that good medicine and science should continue to shun.

The recent shooting at CDC is not why I am resigning. My grandfather, who I am named after, stood up to fascist forces in Greece and lost his life doing so. I am resigning to make him and his legacy proud. I am resigning because of the cowardice of a leader that cannot admit that HIS and his minions’ words over decades created an environment where violence like this can occur. I reject his and his colleagues’ thoughts and prayers, and advise they direct those to people that they have not actively harmed.

For decades, I have been a trusted voice for the LGBTQ community when it comes to critical health topics. I must also cite the recklessness of the administration in their efforts to erase transgender populations, cease critical domestic and international HIV programming, and terminate key research to support equity as part of my decision.

Public health is not merely about the health of the individual, but it is about the health of the community, the nation, the world. The nation’s health security is at risk and is in the hands of people focusing on ideological self-interest.

I want to express my heartfelt gratitude for the opportunities for growth, learning, and collaboration that I have been afforded during my time at the CDC. It has been a privilege to work alongside such dedicated professionals who are committed to improving the health and well-being of communities across the nation even when under attack from within both physically and psychologically.

Thank you once again for the support and guidance I have received from you and previous CDC leadership throughout my tenure. I wish the CDC continued success in its vital mission and that HHS reverse its dangerous course to dismantle public health as a practice and as an institution. If they continue the current path, they risk our personal well-being and the security of the United States.

Sincerely,

C. Daskalakis MD MPH (he/his/him)

For more information, please follow:

• Your Local Epidemiologist

• Dr. Melanie Matheu - Lil Science

• Dr. Zachary Rubin (yes, he and Dr. Matheu are married and I love it)

• Dr. Lucky Tran (Substack)

• Dr. Nini Muñoz - Teaching it Apart

• SARS-CoV-2 (Covid 19) on Threads ** (disclaimer - this account is unverified and though it provides information that largely ends up being credible, use caution as it is anonymous)

Today is August 8th, and I’m still not finished.

Dynamic disabilities make planning writing or any mental activity especially difficult: some weeks I can complete a few hours of (slow) work; some I can barely get out of bed. While most times my exhaustion prevents me from being able to find the mental energy to write, often when I do have energy, brain fog sets in and makes the task entirely impossible. (Throw in a dash of ADHD and it’s extra hard-mode.)

My brain lately feels as if it’s moving in slow motion, enveloped in some sort of imaginary cloud. When I picture brain fog, I see it as if I’m wading through a dark, deep marsh. This air is thick, like you could cut through it with a knife., Everything around me falls under the shadow of dead trees, which loom low to create a canopy of branches, pressing in on me. With each step forward, I move slower through the water as it rises - first above my ankles, then to my shins. With a gloved hand, I reach down and realize that it’s not just dirty water: it’s the runoff of the thoughts that have escaped my brain, pooling around me, lost to time.

Though frustrating, I have been trying to come to terms with this diminished ability to write: by releasing the work in smaller batches, finding subjects to write shorter pieces about, and even taking part in a micro essay project. It made my difficulty with completing larger pieces a bit better, with less of a self-imposed deadline to stick to.

Subscribe now

Three weeks ago, a new obstacle was added to the list of ones keeping me from writing. My mom was admitted to the ER one evening with difficulty swallowing following weeks of pulmonary and cardiac testing. Finally, all her mysterious symptoms that had been plaguing her for months could not be ignored any longer.

She was quickly admitted to the Cardiac ICU, and after multiple intubations, surgeries, biopsies, and a host of other procedures, my mother was diagnosed with a rare autoimmune condition. This condition is so rare, in fact, that we were told the staff at the hospital only sees it once per year on average: Polymyositis.

Polymyositis (PM) is a rare inflammatory disease that causes muscle weakness and inflammation in adults. It's a type of myositis, which is a group of muscle diseases that involve muscle inflammation. PM occurs when the immune system's inflammatory cells attack muscle fibers, causing weakness in the skeletal muscles. The muscles closest to the trunk, like those in the hips, thighs, shoulders, neck, and upper arms, are usually affected the most (via Miositis UK)

Even though my mother had been seeking medical care since last fall, no one was able to diagnose her with polymyositis until she was in the ER literally dying - something well understood by those in the chronic illness community. We have heard the analogy used of “horses versus zebras” in a medical setting: doctors are trained that “if you hear hoofbeats, look for horses, not zebras.” This leads to a sometimes over-simplification of complex illnesses, and misunderstanding of patients’ symptoms. Unfortunately, not every doctor is named Gregory, and not every patient with a rare illness’s experience is like being in an episode of House.

For the first time since becoming disabled, I traveled out of state to be with my family. As anticipated, I quickly found myself at my energy limits despite spending what money we could to mitigate the impact of traveling, like upgrading my seat on our flight to first class and buying a rollator to use and keep at my parents’ house. After all - what good would my visit be if I ended up sick and being a burden on everyone once I arrived?

Among so many other things, the “Lab Leak” article was about the last thing on my mind as I sat at my mother’s bedside, using my rollator seat as a chair so that I could fit between her bedside and ECMO machine. While watching the clock to see how much of our allotted hour of visiting time was left, studying her drooping eyelids between every few words I spoke, and listening for the nurses to enter, I was also internally monitoring my own health and stamina to try to ensure that I was not going outside my energy envelope.

Narrator’s voice: She did, in fact, push outside her energy envelope.

The past few weeks have served as a reminder that even though I’ve tried to shed expectations and ableist beliefs about self worth since becoming ill, I still am imposing unnecessary deadlines and self-manufactured pressure on myself. For some reason, I’m still finding myself worried about the “why” behind what I create, whether that be written, crafted, or otherwise. It’s as if I need to find reason for creating art outside of the act of creating. And for what? My chronic illness has made it nearly impossible to complete work at all, let alone without a ridiculous and self-imposed timeline. Why is it so hard for me to simply enjoy things, to create because we are made to create, to find joy in something that no one else may ever even experience or consume?

But, I suppose that’s some of the leftovers. It’s the knee-jerk reaction; the reflex. I still, to a degree, see myself in my head as healthy. It is natural to think that I should have no problem committing to a 10-minute writing sprint a day, publishing on a one-article-a-week schedule, or posting daily art on social media. In reality, achieving one of those things in a week is currently a huge feat. Even nearly three years in, I still have trouble figuring out how to stay within the confines of my own energy envelope.

So it’s time to say it again as a reminder to all of us:

Your worth is not measured by your productivity.

Your output does not equal your value.

Your chronic illness does not define you.

Your “job” right now is to take care of your health.

You are inherently worthy and deserving of love.

You are allowed to rest without judgment or guilt.

Yes, chronic illness makes life unpredictable. Bad things will still happen. People in your life will get sick and die. Jobs will be gained and lost, terrible people will run countries, innocent people will be starved by evil regimes (free Palestine.) Life is unpredictable, at times random, unfair, and outside our control. We have to accept this, acknowledge this, let it go, and move forward.

Masking, Social Distancing, and Lockdowns

To recap: “Lab Leak” aims to stoke distrust in the safety efforts that began during 2020 and exist today to help mitigate the ongoing spread of COVID-19. It promotes popular right-wing talking points that refute the need for masking and social distancing, undermining health guidance provided by the World Health Organization.

The website focuses primarily on discrediting masks, social distancing, lockdowns, COVID-19 policies (labeled “misinformation”), and the WHO/WHO’s “Pandemic Treaty”. It also includes multiple false and misleading statements regarding the “Lab Leak” theory.

The following are highlighted excerpts from “Lab Leak”, providing right-wing propaganda instead of vital health information and resources.

Masking

“There was no conclusive evidence that masks effectively protected Americans from COVID-19. Public health officials flipped-flopped on the efficacy of masks without providing Americans scientific data — causing a massive uptick in public distrust.”
- Lab Leak

Readily available scientific data has proven that well-fitting masks reduce the transmission of airborne viruses. The NIH’s website states that “wearing mask[s] in public is essential as its effectiveness has already been well established by the current studies […] masks are shown to be effective in reducing the spread of respiratory diseases.”1 The NIH’s study references multiple external cases on which its findings are based.

The CDC has a fact sheet on the importance of masks2, stating that NIOSH-approved filtering facepiece respirators without exhalation valves are estimated to provide above 95% filtration.

In addition, Yale University conducted a study3 of villages in Bangladesh and the outcome of providing surgical masks to their communities. This study involved nearly 350,000 people in 600 villages. A 29% increase in mask usage showed an overall reduction in symptomatic infection at 9%, with ages 60+ seeing a decrease of symptomatic infection at 35%.**

Social Distancing and Lockdowns

The “6 feet apart” social distancing recommendation — which shut down schools and small business across the country — was arbitrary and not based on science. During closed door testimony, Dr. Fauci testified that the guidance “sort of just appeared.”

The statement that the 6 feet apart rule is not based on science is false, and Dr. Fauci’s comments were taken out of context.

The 6-foot guidance was empirical evidence: a determination based on observation and experiences rather than data. The development of COVID-19 safety guidelines was informed by the knowledge of how other viral illnesses transmit during a time when very little was known about SARS-CoV-2. (It is also worth noting that Dr. Fauci didn’t implement the 6-foot “rule,” but rather, the CDC.)

Dr. Fauci was interviewed on January 9, 2024, before the Select House Subcommittee on the Coronavirus Pandemic. Media headlines erroneously claimed Dr. Fauci “made up” the 6-foot guideline.

The full quote, as found in the transcript for the hearing4:

Fauci: “You know, I don't recall. It sort of just appeared. I don't recall, like, a discussion of whether it should be 5 or 6 or whatever. It was just that 6-foot is --”

Question: “Did you see any studies that supported 6 feet?”

Fauci: “I was not aware of studies that -- in fact, that would be a very difficult study to do.”

Question: I know. I'm just trying to figure out why 6 versus 3 or 4 or 5.”

Fauci: “Yeah. Yeah.”

Question: “Like, 6 is a significant distance. I mean, you've testified here. I think you testified in front of Mr. Scalise a couple times when I was working for him. And recalling the hearing rooms, instead of, like, seven members on the top of the dais, there's two, and --”

Fauci: “Right.”

Question: “-- it was just two staffers behind.”

Fauci: “Yeah. Yeah. I think it would fall under the category of empiric. Just an empiric decision that wasn't based on data or even data that could be accomplished. But I'm thinking hard as I'm talking to you.”

Question: “Uh-huh.”

Fauci: “I don't recall, like, a discussion of, "Now it's going to be" -- it sort of just appeared, that 6 feet is going to be the distance.”

So… was the 6-foot rule accurate?

The 6-foot rule did show a reduction in virus transmission, both at the aggregate level and the individual level. Some research indicates that the 6-foot rule is too small a distance and that droplets can travel even further than 6 feet. A study from Oxford5 points out the over-simplification of the 6-foot rule:

“Such rules are based on an over-simplistic picture of viral transfer […] Smaller airborne droplets laden with SARS-CoV-2 may spread up to 8 metres […] relaxing the distancing rules, particularly for indoor settings, might therefore risk an increase in infection rates. In some settings, even 2 metres may be too close.”

Intent is important in understanding that the 6-foot rule was never intended to be a precise measurement. Rather, at the start of the pandemic, safer health practices such as washing hands, mask wearing, and monitoring oneself for symptoms were vital precautions during a time of uncertainty. We didn’t know much—if anything—about SARS-CoV-2, but we did know about other viruses, specifically Coronaviruses.

The 6-foot policy originated in 2007, when it was included in the pandemic playbook during the Bush administration. It was based on knowledge of the flu, believing droplets to be the main form of viral transmission.6

COVID-19 “Misinformation”

Public health officials often mislead the American people through conflicting messaging, knee-jerk reactions, and a lack of transparency. Most egregiously, the federal government demonized alternative treatments and disfavored narratives, such as the lab leak theory, in a shameful effort to coerce and control the American people’s health decisions. When those efforts failed, the Biden Administration resorted to “outright censorship—coercing and colluding with the world’s largest social media companies to censor all COVID-19-related dissent.”

It’s challenging to analyze unclear claims such as this one, which doesn’t point to specific examples of misinformation. However, overwhelming evidence has repeatedly pointed to the Trump administration as the top source of pandemic-era misinformation.

As scientists learned more about COVID-19, safety guidelines were updated accordingly. This change in guidance didn’t mean that prior information was faulty or misleading, but rather that methods to protect ourselves were evolving along with our understanding. We learned which type of masks were most effective (KN95 or N95 instead of cloth) and how often to receive an updated COVID-19 vaccination (annually in most cases, as opposed to every 6 months). We learned that the primary transmission of the virus was through aerosol rather than droplets, and that the likelihood of surface transmission is low.

NPR reported in September of 2020 that Trump often gave the American public “the complete opposite” of what his health experts were telling him7. Olivia Troye, a former staffer, claimed Trump’s biggest concern over the pandemic was how it could hurt his reelection campaign. She stated the Trump administration knew as early as February 2020 that the country would enter a pandemic. Yet, Trump continually called the pandemic a “hoax” and even blamed Democrats for orchestrating the virus.

On October 6, 2021, the New York Times reported that Trump was the “single largest driver” of Coronavirus misinformation8. Cornell University analyzed 38 million English-language articles about the pandemic, aggregating data concluding that Trump was the largest source of misinformation. The most significant subset of misinformation was attributed to “miracle cures,” in which Trump promoted treatments such as anti-malaria drugs, disinfectants, and ultraviolet light.

In our next post, we’ll discuss claims made regarding lockdowns, the World Health Organization, and the “Pandemic Treaty.”

6

Your Local Epidemiologist, “6 Foot Rule, Fauci, and the Bigger Picture”

Your Local Epidemiologist

6-foot rule, Fauci, and the bigger picture

Last week, Fauci testified before a special House subcommittee. While the subcommittee’s main focus was Covid-19 origins, other topics snuck in, including the 6-foot social distancing policy during the pandemic. This was a key measure taken to slow down spread, including at schools, businesses, and places of worship…

Read more

2 years ago · 736 likes · 152 comments · Katelyn Jetelina

Although these posts may not always be as timely as I’d prefer (due to the fatigue and brain fog caused by Long COVID), the topics remain highly important. The information contained has been gathered from a wide range of credible sources, providing the reader with an honest and thorough analysis of the topic at hand.

In April 2025, I sat stunned as a new update to the government-run COVID 19 websites, covid.gov and covidtests.gov loaded on my browser. A new, dark blue website filled the screen with the giant words, “LAB LEAK,” filling the header, an image of President Trump walking between them. Gone was the prior information hub of COVID-19 news and testing resources.

Reading through the website, I encountered claims I had not previously given credence to alongside information that contradicted what I thought I knew. I felt compelled to dig deeper. Even though it had been five years since the start of the COVID-19 pandemic, the website presented statements as fact that raised doubts in my understanding and beliefs.

What if I had been wrong about the cause of the virus?
Is the virus not as dangerous as I believed?
Had I been misled all this time?
Are social distancing guidelines no longer necessary?
Did the WHO lie to us at the behest of China?
Why were these claims being made on the website, and why now?

I set out to answer these questions for myself and others. In the months since, I came to easily conclude that it is primarily a propaganda piece with far-reaching intentions. “LAB LEAK” was designed to misinform the American people and sow distrust in healthcare experts, community health officials, and the prior administration’s response to the Pandemic. Despite the falsehoods, unsubstantiated claims, and deep bias, three months later it remains the official government website on the SARS-CoV-2 virus, still replacing resources for testing, safer practices, and information on Long COVID.

The repercussions of this website are widespread: it is the undercurrent present among attacks on our healthcare system, scientific research, and disaster response preparedness in the United States. There is no question that scientists and experts fear our inability to respond adequately to the next pandemic, let alone our ongoing response to the current pandemic. This response is now hindered further by limiting access to personal protective equipment and updated vaccinations.

The path to understanding the major claims presented on the “LAB LEAK” website begins with the illness emerging publicly in late 2019 and continues to the present day. With the gift of hindsight, we can navigate its history through news articles, research papers, scientific journals, and other professional publications, laying out a clear picture of what happened and, by contrast, where the Trump Administration was able to take advantage of legitimate questions by seeding doubt. In tracing the progression of the scientific community’s understanding of the virus, from its early days during the pandemic to the present, we can see how evolving information shaped the subsequent worldwide response.

Over the next few weeks, “LAB LEAK: A Dangerous Distraction” will be shared with you, portioned into digestible pieces. While the information is important, it’s necessary to recognize that there are many matters needing the focus of Americans at this time. Managing our energy is crucial to avoiding burnout and resisting oppression in the long term.

The article in its entirety will cover the following key points:

• “LAB LEAK” isn’t just a website. It’s a foundation used to erode public trust in vaccines and the societal need to continue to protect ourselves from the continual harm caused by the SARS-CoV-2 virus.

• The website serves as evidence of a deeper ideology aimed at minimizing the perceived risk of the virus. An estimated 40-70% of people with Long Covid meet the criteria for ME/CFS, with Long Covid occurring in more than 1 in every 10 infections. It is the Trump Administration’s intention for Americans to act as though the pandemic is “over”. With this mindset, it is easier for the administration to enact legislation and limit funding, reducing research and denying disability resources to those meeting the diagnostic criteria for Long COVID and related post-viral illnesses.

• “LAB LEAK” is a political tool used to incorrectly point blame at the Biden Administration, though the Trump Administration ordered nationwide shutdowns, implemented social distancing, and mismanaged the early days of the pandemic by politicizing mask wearing.

• The Trump Administration wasted precious time early in the pandemic by blaming China for the spread of the virus instead of promoting science and vaccine awareness. The Trump Administration pressured the FDA to authorize unproven treatments and shared internet trends and fake treatments on social media, such as the use of bleach and UV rays to treat infections. The Trump White House even backed a fake petition with bogus names to promote the idea that herd immunity was the best defense against COVID-19.

• Dangerous budget and personnel cuts have destroyed research and public health initiatives in the United States, including ending crucial research programs and clinics for COVID-19 and Long COVID nationwide.

• The Secretary of the Dept of Health and Human Services, Robert F. Kennedy, Jr., has begun his attempt to erode public trust and access to vaccines. The latest in these attacks focuses on ACIP, the advisory council that determines the course that vaccines will take each fall. This includes the elimination of US funding for international childhood vaccine programs.

• It is unclear if the US will have access to updated COVID-19 vaccinations in the fall of 2025. If available, the vaccines are set only to be suggested for the elderly and people deemed “high risk.” Even if the COVID-19 vaccine is available, it may not be covered by insurance companies.

• Ultimately, what we’re witnessing is gaslighting: a concerted attempt at rewriting the public understanding of history.

In the next post, we’ll dive into the “LAB LEAK” website and how it replaced vital information on COVID.gov and COVIDTESTS.gov.

Please subscribe to this Substack to receive notifications when the next installment of “LAB LEAK: A Dangerous Distraction” is released.

Subscribe now

Share

From ICE raids to murdered state representatives, arrested politicians and mayoral candidates, the events seem to get worse by the day. We hear stories: masked ICE agents are carrying out raids, refusing to present arrest warrants. Groups of men claiming to be ICE are cornering women in Los Angeles bars, demanding personal information. Families are unable to find their kidnapped family members, taken from Home Depot and Walmart parking lots, without a trace left behind. There are accounts of horrible conditions people are kept in - without adequate food and water, no change of clothes nor sanitary products, in detention center and immigration building basements. No one to verify one way or another; a country full of communities left in uncertainty.

However, this past week felt particularly egregious: escalating ICE raids in Los Angeles and across the country, the possibility of the United States aiding Israel in its attacks against Iran, RFK Jr. replacing the entire CDC vaccine advisory council, HIPAA privacy rules being overturned, and the “Big Beautiful Bill” inching closer to a vote in the Senate.

At some point I’ll get back to posting work such as the deep dive I’ve been promising some of you since April - because I assure you, it is still relevant. However, tonight I’d like to highlight three important issues you might have missed before the weekend hits, including one action item that needs your help TONIGHT.

SAVE COVID VACCINE ACCESS

Thanks to Long Covid Justice for sending out the following alert:

Could we lose COVID vaccine access? In case you missed it: TONIGHT is the deadline to submit comments (or sign up to testify) at the upcoming meeting of the CDC’s vaccine advisory committee (ACIP), which is now stacked with anti-vaxxers.

We're sending this urgent reminder because we've just heard that most comments submitted so far are anti-vax. We need THOUSANDS more comments to fight the wave of comments coming from anti-vaxxers! Join us in letting the CDC know that we demand universal vaccine access.

ADD YOUR COMMENT by 11:59pm ET tonight: www.regulations.gov/commenton/CDC-2025-0024-0001

LEARN MORE & GET AN EASY TEMPLATE FOR YOUR COMMENT:

peoplescdc.substack.com/p/demand-the-cdc-provide-broad-access

TRUMP APPOINTED JUDGE OVERRULES BIDEN-ERA HIPAA POLICY

A Trump-appointed judge has overturned a HIPAA privacy rule enacted by the Biden administration which prevents healthcare professionals and insurance companies from sharing information about abortion or gender-affirming care with law enforcement. The judge in Texas ruled that the Biden administration “acted unlawfully” by implementing the change to HIPAA privacy laws in 2024, which added “reproductive healthcare” to protected health information, in an attempt to prevent the sharing of information with law enforcement who may be seeking to punish mothers for seeking abortions. The judge ruled that only Congress can expand HIPAA protections; the decision blocks the rule nationwide. Read more.

Finally, it seems the “Big Beautiful Bill” is poised for a vote next week. Jess Craven does a great summary of what’s not being discussed enough in this bill, but here are the highlights:

• 700 to 800 billion dollars - that’s almost one trillion dollars - in cuts to Medicare and Medicaid. Source: NY Times, Washington Post

• An estimated 51,000 preventable deaths per year due to healthcare cuts. Source: Yale School of Public Health

• Cuts to SNAP - affecting senior citizens, children, up to 1.2 million veterans, and low-income Americans with disabilities. Source: MSN, Center on Budget and Priority Policies

• Up to 18.3 million children will lose free lunches in schools. Source: Education & Workforce Committee House Democrats

• Cuts to green energy tax credits, putting an estimated 400,000 rural jobs at risk (and will increase individuals’ electricity bills, per the NYT) Source: Fortune, EnergySave, CNN

• A new provision allows the government to sell off millions of acres of public land for oil and gas extraction. Source: New York Times

• Triple funding on ICE, bringing the total cost to $170 billion. Source: WOLA

• Defunding of Planned Parenthood, closing around 200 clinics across the country and adding $300 million to the deficit. Source: Mother Jones

• Increased Pentagon defense budget - $150 billion. Source: Air and Space Forces Magazine

• Eliminates Student Loan Borrowers’ income-based repayment options. Average student loan payment will go up by approx. $3000 per year. Source: The Nation

• National private school voucher program. Source: CNN

• Ban on regulating AI for 10 years. Source: Poynter

• Limits on a court’s ability to issue temporary restraining orders. Source: Reuters

• Removes Federal taxes on some guns and all gun silencers. Source: Bloomberg

• Raises the debt ceiling by $5 trillion. Source: New York Times

• Overall, the bill will add at least 2.8 trillion dollars to the national deficit. Source: Wall Street Journal

And where does this money go? Tax cuts for the wealthiest. That’s it.

Wishing you all a restful and restorative weekend. See you next week.

If you are one of my followers on Social Media, you may have seen my comments and posts, however, what’s truly been shocking was when Senator Alex Padilla was detained today as he attempted to ask questions to Kristi Noem during her press conference.

If you haven’t seen the video, take a look here.

I’m appalled that my State Senator was forcibly removed from Kristi Noem’s press conference for asking a question pertaining to the way she is directing ICE agents and law enforcement in the state he represents. The Press Conference was relating to the state that he represents, and he was handcuffed and detained rather than addressed.

This is not normal, and it’s not okay. I’m disgusted by the treatment of my Senator. I’m also dismayed by the media and right’s portrayal of the events happening in Los Angeles, which we locals are witness to; they’re trying to rewrite history by asserting that our city is being destroyed, lit on fire, and overcome with lawlessness. The reality is that the protests have been overwhelmingly peaceful with individual agitators taking advantage of the situation carrying out a small amount of looting and damaging of property.

Beyond that, I’m dismayed and heartbroken at the widespread kidnappings of men, women, and children at the hands of ICE, indiscriminately swept up in workplace raids. No amount of looting nor property damage equates to the trauma inflicted upon these people’s lives. This is an unjust targeting of people because they “look” like immigrants. Immigrants - documented and undocumented - make up the fabric of Los Angeles in a way different than the rest of the country, because they are tied to the area as it is often their ancestral land. This unjust and inhumane treatment should make each of us ashamed by the actions of our government.

This weekend we saw children separated from their parents, abducted at their elementary school graduation ceremonies. Day Laborers waiting to be hired for temporary jobs (a common occurrence in LA) were picked up from the parking lots of Home Depot. Kitchens and restaurants and loading docks and even the sidewalks outside Disneyland and Universal Studios have been descended upon by ICE to snatch people off the street. People attending required immigration meetings were detained outside immigration offices, trying to “follow the rules” and work through the system to obtain citizenship. In addition, some individuals observing the events who are citizens but happened to appear Hispanic or that they may be immigrants were also detained without question.

To know California history is to recognize the genocide of the Native Americans who occupied the Los Angeles County area. This land was originally inhabited by, and is still cared for today, by the Tongva, Tataviam, Serrano, Kizh, and Chumash Peoples. (See: Los Angeles Land Acknowledgment.) Those descendants continue to inhabit her lands today. Whether the United States government views people as “legal” or “illegal,” it is my belief that no human is illegal on stolen land.

The argument for allowing immigrants, “legal” or “illegal” aside, one point remains: the way people have been treated in the ICE raids taking place throughout Los Angeles is inhumane. People have been crammed together in the basement of the Federal Detention Center without adequate food nor water, women reportedly left without period products are forced to bleed through their clothes. No idea how long they will be detained, no knowing if they’ll be extradited outside of California, or the country, without a criminal history. These people contribute to our society and our economy - now the fourth largest in the world.

There is no reason to deport these people, nor to target them, aside from turning the focus of the American people’s off Trump and his illegal actions and onto each other. When the people are too focused on being afraid of, and fighting, each other, they won’t notice that the rich are the ones actually draining the country of its resources and the people of their ability to have a comfortable and happy life. Lying in order to manufacture an “insurrection” in Los Angeles helps to support a narrative that the National Guard and Marines are necessary to uphold the peace. The reality that these events are happening in the week leading up to Trump’s military parade on his birthday Saturday is no coincidence. I fear that he will use this as an excuse to deploy the military throughout the country.

It is my hope that people throughout the country feel empowered by the actions taken in Los Angeles over the past week and will stand with us in solidarity. Let us continue to stand tall against authoritarianism both in California and across America.

In August of 2022, I contracted COVID-19. What was a largely asymptomatic illness progressed over a span of weeks, triggering multiple physical ailments, and eventually becoming recognized as Long COVID. Over the months that followed, my health declined rapidly. I was diagnosed with Myalgic Encephalomyelitis (formerly known as Chronic Fatigue Syndrome, aka ME/CFS), Postural Orthostatic Tachycardia Syndrome (commonly known as POTS), and Hypermobility Spectrum Disorder. 18 months later, I have come to find my days plagued by intense fatigue, horrible chronic pain, and a myriad of other symptoms.

Within a matter of months following my ME/CFS diagnosis, I became primarily bedbound, was placed on a forced medical leave by my employer, and ultimately lost my job. My entire life and its surroundings became nearly unrecognizable to the person I was before. Prior to illness, I defined myself as a hardworking, career-oriented person with a very active lifestyle. Living in Los Angeles, I kept my schedule busy with regular hikes with my dogs on nearby trails, jogging, attending concerts, photographing portraits and events in my spare time, and was a member of multiple professional organizations within my industry. There was rarely a weekend without plans or a weeknight without something to do. On top of it all, I was newly married and just embarking on a new life together with my husband of just five months - that is, when illness first took hold.

Nonfinite loss is defined as those loss experiences that are enduring in nature, usually precipitated by a negative life event or episode that retains a physical and/or psychological presence in an ongoing manner (Bruce & Schultz, 2002).

For me, Nonfinite loss has taken multiple forms: job loss, the loss of my health, the loss of my social life, the end of newly formed artistic endeavors, the loss of independence, and a total disruption of my life. Now, most days I am in bed, relying on my husband for basic tasks like cooking, cleaning, walking my two dogs, and caring for our cats. I’m able to leave the house on average once a week, either for a doctor’s appointment, or for a simple errand such as to visit a favorite bookstore or the library. Anything beyond these exhausts me to the point of what I call an energy crash, often leaving me in bed with intense flu-like symptoms for days.

Recognizing that this loss was in turn causing grief was important to my ability to cope with the changes in my life. Applying the word grief to my experience gave a name to the emotional roller coaster that I was riding. It helped me analyze the deepest points of pain and sadness that were occurring in my life and aided in my attempt to understand my new reality. Learning that grief can occur in many different forms - not just in death as I had previously perceived - helped me to begin both healing and accepting.

Losing my job was one of the most difficult points of grief for me. Throughout my career spanning over 20 years, I’d prided myself in my job. Suddenly being forced to stop working brought me to face the extent my identity and sense of purpose were tied to the success of my career. The emotional impact of not working plagued me with questions: Do I have a purpose or worth if I’m not productive? Am I allowed to have good things in life if I’m not working? Did I somehow choose to be sick?

Financial concerns also began to manifest as my husband and were quickly forced to rely on his income alone. As he became the sole provider for my family, I had doubts about how he would perceive me. This was not the life either of us envisioned when we married months prior. Why should so much burden fall to him? Would he stop seeing me the same way he had - the vibrant, fun-loving woman he married? With me as a primarily bed bound person now, what did our joy look like? Where would it come from?

Through the help of a great therapist and the support of my loved ones, I shifted my mindset on where real value comes from. Realizing that my sense of purpose needed to be uncoupled from the expectations for my career, I found that purpose can be found outside of employment. Learning that my value comes from my existence and not because it needed to be earned was revolutionary for me. I could cultivate self-esteem and self-love through honoring the beauty in my continual existence, despite pain and illness. Ultimately, I came to believe that I am inherently worthy of good things and happiness. My illness journey provided an opportunity to examine who I really was outside the confines of a career and what society deemed valuable. My husband actively chooses to stay by my side in my illness every day, grieving the loss of my old life along with me, and serving as a continual reminder that I am worth caring for and loving.

Learning how to cope with the uncertainties of life due to my illness has been a challenge. This includes readjusting where my husband and I will be able to afford to live and the kind of home we will have on reduced income. The feelings of loss we experienced realizing we would not be able to continue living in the area we love, nor purchase a home, have taken time to accept. However, recognizing this grief and allowing ourselves to come to terms with it have enabled us to move forward.

I’ve accepted my nonfinite loss and the reality that feelings of sadness may never go away. I will likely move through the different stages of grief repeatedly (such as denial, anger, bargaining, depression, and acceptance), as different facets of this loss arise in my life. Recognizing the grief that accompanies loss provides a strength in both understanding myself and normalizing my emotions.

The grief we feel is just that; normal. By allowing ourselves to feel our complete emotions, we are fully witnessing the human experience. Nonfinite loss is at times particularly difficult because it seeps throughout every aspect of one’s life. There is no prescribed grief timeline to navigate, no blueprint for how it will unravel. It will continue to show up as life evolves, and we honor the experience of our grief by taking care of ourselves. While at times experiencing our loss may seem isolating or lonely, relying on a community of friends and family can ease the burden we carry and help illustrate that this new life, the one that is different and unplanned, can still be as beautiful and vibrant as the one we leave behind.

While the first posts were personal and off the cuff, I discovered my desire to create longer pieces that dove into more complex topics the media was not covering in depth. Written like an academic research paper, my goal was to compile as much credible information as I could on a particular subject, allowing a reader to form his or her own opinion, and highlighting the importance of issues impacting health and disability that may have disappeared too quickly within the 24-hour news cycle.

Over a month ago, I began writing what would be the first of those posts, in anticipation that it would be ready to publish later that week.

Since then, I’ve endured multiple ME/CFS flares of extreme fatigue, dizziness, pain, and brain fog. For every hour I am able to write it takes over a day to recover. My goal of writing and publishing a paper in the same week was based on my former capacity; the one I had pre-Long Covid, while working full time with hobbies, friends, volunteer commitments, and regular hiking with my dog. Now, I must extend that goal out a month - or two – maybe, even three. I suppose we will see where I eventually end up.

In 2020, I spent a lot of time outdoors and hiking - that year we had a “Superbloom” in California. This was taken at the Poppy Reserve in Antelope Valley

In the meantime, the content of that post becomes even more important as the continual dismantling of healthcare resources takes away more and more from everyday Americans, such as losing the recommendation that healthy people, pregnant women, and children are vaccinated against COVID-19, the barrier is implemented preventing those who can be vaccinated from receiving timely updated booster vaccinations, and insurance companies are no longer required to cover the vaccines. And yet I’m still editing, one paragraph at a time, a post about news that broke mid-April.

It’s an accurate example of what life with Long Covid is like: struggling to keep up with the rest of the world, though no matter what, you find that you are destined to fall behind.

For disabled and high risk people, this chasm - the increasing space between an accessible world for us and the reality we live in - took the form of indoor dining, return to office mandates, abandoning masking and safer covid practices, and low vaccination numbers (an estimated 23% of Americans are currently up to date on COVID-19 vaccines). Most recently, the removal of COVID-19 vaccinations for anyone “healthy” under 65 threatens herd immunity, one of the best ways to keep high risk individuals safe. The world around us is becoming increasingly inhospitable for the disabled.

Image Courtesy Pixabay

Online, keyboard warriors comment “get your booster, libtard” as if vaccination is a bad thing. Pseudoscience is spewed as anti-vaxx proponents repeat talking points promoted by RFK, Jr. - and with good reason, as he’s been promoted to the most senior healthcare position in the country. Why wouldn’t they believe the falsehoods when they’re much more convenient to a narrative of intentional harm than the very random, and at times scary, nature of existence as observed by science?

So, I am reminded that existing both in the world as someone with Long Covid and online is not going to look the way it used to. My goals for myself aren’t going to be the same and the way I write and communicate isn’t going to follow the same schedule as healthy people’s. However, my words matter more than ever now. I speak for those without the energy to, even when mine drips out like a leaky faucet instead of flowing at full capacity. The stories and studies may not be breaking news, may not be sitting on the cutting-edge, but they still will find space to exist in the place where important topics need to be held onto instead of falling away into the void of the lost, replaced by another scandal or distraction.

I’m thankful for those who will continue to read and stay with me. The longer, multi-installment posts are coming, and I appreciate anyone who waits to read what I have to say. I think it will be worth it.

Photo by Colin Lloyd on Unsplash

Footage spread around the world of the brutal killing in Minnesota at the hands of police, and people had the time to react and respond. Unburdened by in-person work and “normal” obligations that would normally fill our time and distract from such events, millions took to the streets. They protested the killing, demanding recourse and accountability from the police. The “Black Lives Matter” movement was in full force.

One of the common responses, particularly by white people, was to begin trying to unpack the layers of our own implicit bias and how we had unintentionally participated in upholding systemic racism. I was fortunate to attend various talks and workshops hosted by Vernā Myers, a leading Diversity, Equity, and Inclusion expert. Quickly, I came to realize how much I didn’t know about the part I played in contributing to inequality as a white woman. Weeks in, I was only scratching the surface of the ways white people like me had unknowingly hurt people of color, and the ways I had upheld a systemic system of injustice and oppression.

Something discussed often in these meetings was impact versus intent. It was common for white people to find their intentions misaligned with the impact of their actions. We frequently centered conversations on ourselves rather than marginalized people. We continually excluded the people we claimed to be advocating for by not amplifying their voices. Telling people that we were “not racist,” rejecting feedback when confronted with racist behaviors, or doubling down on troublesome comments are all examples of the harmful impact that well-intentioned actions may have.

“Impact versus intent” is a concept that I continually strive to apply to my life, running my actions and comments through this filter. It forces me to check my intentions and my biases. While impact is more important than intent in most cases, I have come to pose an alternative stance to those living with ME/CFS:

Uniquely, our intent matters more than our impact.

Living with an energy-limiting disease can cause our impact to be out of alignment with our intention. Because of this, our intent should matter the most in our relationships, as we possess a limited ability to show up for others in our everyday lives.

Photo by Helenn Melo on Unsplash

Here’s an example: a healthy person (let’s call her Jane) may ask a friend out to brunch and a movie on a Sunday to spend time together. In the same show of friendship, someone with ME/CFS (let’s call her Hannah) may ask a friend to come over to her apartment, sit on the couch, and chat for an hour.

Jane may decide she doesn’t want to go out on Sunday, and cancels the plans so she can stay home and lounge instead. Hannah cancels at the last minute because she wakes up in a crash and isn’t able to get out of bed for the day.

The impact Jane creates by cancelling these plans makes the friend feel slighted. They might not want to try to make plans with them again, especially if this happens multiple times. Hannah's impact could also cause a friend to feel slighted if they don’t understand the situation. Not only were they only offered an hour of time to catch up, but then plans were cancelled at the last minute. The friend could feel rejected and unappreciated, and the impact would override any good intentions.

However, an understanding friend would acknowledge that they were offered the maximum amount of time possible within the sick person’s “energy envelope.”1

The friend recognizes that Hannah cared about their friendship despite her illness. The friend acknowledges that it’s disappointing that the plans fell through, but Hannah still cared enough about their friendship to try. The friend feels valued by Hannah’s attempt at making plans.

It's easy to feel like a bad friend or a failure as someone living with ME/CFS, because we remember how we were in healthy times. Our brain may tell us that cancelling will hurt friendships and that people may become mad at us when this happens repeatedly. On top of that, as people trying to learn how to show up for marginalized communities continually, it’s easy to apply lessons that apply to antiracism work, such as “impact vs intention,” to our lived experience trying to maintain relationships as disabled people.

Even though I’m unable to show up in the ways I wish I could – the ways I did before my illness – it’s important to remember my intentions and who I am. Viewing how I interact with the world through the lens of who I am at my core centers me, not the disease. Instead of replaying my shortcomings, I am reminded that I’m a generous, loving friend, who values friendships and connection, giving her time and herself in her fullest capacity – even when that capacity feels like a thimble instead of a bathtub.

An example of showing myself this understanding is this weekend. ME/CFS awareness day is Sunday, May 11^th. The nonprofit group ME Action Network has shared various ways to bring awareness to ME/CFS, the need for new federal research funding, and the reinstatement of funding that the current administration has cut. This includes a protest in Washington, D.C., and a variety of prompts for social media. Though I intended to contribute to the social media campaign, I was unable due to the severity of my illness.

When you are struck by a disease that takes so much, sometimes all we are left with are the intentions. I invite those like me to sit with their intentions. We must acknowledge that we would have done what we intended if we were healthy and fully able. Because of this, you are still all those things you were before, even when they feel hidden away from us. It’s also valid to explain to others that we need them to recognize our efforts by our intentions and not by their impact. To show us grace and understanding because of our illness. We must also remind them that we are still the people we were before, who desire all the same things: connection, community, and friendship, even if we cannot always demonstrate it in the ways we wish.

Screenshot from live stream / Sophie Fox

It’s a Sunday afternoon in late April, and Senate Democrats are gathering to apply pressure and persuade four Republicans to vote against the Republican-approved national budget, which would deeply slash Medicare and Medicaid, among other reductions, for millions of Americans.

Watching these moments play out over livestream, it’s blatant how divided our country is. On one side of the aisle, legislators are gathering to share stories of ordinary, everyday Americans who are scared by these budget cuts. Some write that losing access to medical care means death. Parents and grandparents explain that they don’t know how they will feed their children without SNAP benefits or food stamps. These cuts are the abandonment of millions of Americans.

On the other side of the aisle, lawmakers are trying to erase transgender Americans from existence, and U.S.-born children are being deported to other countries. The head of Health and Human Services claims he will find the cause of Autism by September and attempted to hard-launch a registry of Autistic Americans. Entire research centers and offices have been eliminated and defunded over the past few weeks alone. Our public lands – National Parks, National Forests, and Bureau of Land Management lands have been opened up to expanded logging and mining.

The “pro-life” party doesn’t seem to account much for the living.

It is hour 12. A Rabbi has just finished singing “God will build this world from love.” Representative Jeffries now reads the story of a man who has had over a dozen brain surgeries. His copays are over $1,000 a month. He says, “I barely am able to hold on as it is… I need Medicaid in order to survive.”

One commentator remarked that “Capitalism is a system for competition. Democracy cares for those who can no longer compete.” At the sit-in’s conclusion, I have a little more hope for justice and equity to exist.

Many people analyze today's politics and news. They are, mostly, people who understand civics better than I, who know the inner workings of our government without having to do a Google search or re-watch “Schoolhouse Rock!” to remember how a bill gets passed. But as a 40-year-old woman who became completely disabled by Long Covid two years ago, I have a different perspective than many.

My life radically changed in a few short months after my first (and only) COVID-19 infection. I know what is at stake for millions of Americans as we lose protections against the effects of SARS-CoV-2. My hopes for advancements into treatments or a cure are disappearing with the cuts to the NIH, and my worries about another pandemic or mass-disabling event are increasing.

My voice feels so very small, and my existence so threatened. But I can write. I can share my knowledge, stories, and the importance of protecting yourself against the ongoing threat that COVID holds over our health. We need our representatives to understand what is at stake and that we must fight for the disabled community with urgency. Because today it is me, but tomorrow it could be you.

Current estimates say 6% of people have or ever had symptoms of Long Covid1. That number will continue to grow, as each subsequent reinfection increases one’s risk of developing Long COVID2. With government programs like Medicaid and Medicare constantly under attack, we risk facing mass-disabling at the same time as a mass-defunding of social services, resulting in an exponentially greater homelessness crisis.

Information from reliable sources is our first line of defense against the onslaught of “alternative facts,” so it should come as no surprise that the current administration is aiming to cut funding from libraries and museums3. A commitment to educating ourselves – whether that’s reading long-form articles and research papers, watching documentaries, visiting historical museums, or borrowing books from your local library – is one of the most valuable defenses we have.

(For more information on the cutting of funding to the IMLS, consider reading the following article from TIME Magazine: https://time.com/7280715/how-libraries-are-faring-under-trump/ “How Libraries Are Faring Under the Trump Administration Amid Detrimental Funding Cuts”)

As I recognize that I am but one voice among many, it is my desire to write and spread the truth about what we, as a nation, are facing. My perspective comes from that of a sick, disabled woman. While I center on topics about disability rights and our healthcare system, I also have concerns for the erosion of rights and protections on a broader level. My goal is to write as a way to stand up to threats and systems of oppression, to push back on the dismantling of protective systems, and against gaslighting and the rewriting of history.

Ultimately, I will write in the hope that something I say will somehow make a difference.