What You Can Do About Long Covid

A guest essay by Miles Griffis of The Sick Times

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Welcome back.

A couple of weeks ago, Quinn had an incredible conversation on the podcast with Betsy Ladyzhets and Miles Griffis, the editors of The Sick Times, a newsletter chronicling Long Covid, an illness plaguing millions of people that we still know so little about.

We then ran a poll asking you whether you or a loved one are affected by a chronic infectious disease, like Long Covid, and the results were staggering, with 40% of you saying you are affected in some way.

There is clearly a need for action here.

So, for the guest essay this week we invited Miles back to write a practical guide on how we can all be better allies to people suffering from chronic illness.

Instead of our usual Action Steps at the end of the essay, you’ll find resources and ways to get involved linked throughout.

Let’s go.

I’m Quinn Emmett, and this is science for people who give a shit.

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Six Ways To Be An Ally To People With Long Covid

By Miles Griffis

Miles W. Griffis is an independent journalist based in Southern California. He is the co-founder of The Sick Times, a new publication covering the Long Covid crisis and ongoing pandemic.

Since the beginning of the pandemic, over 20 million Americans have developed Long Covid, a debilitating disease following Covid-19 infection that can last for years and may be lifelong.

I’m one of them, I’ve been disabled by Long Covid since early 2020.

The disease has ruptured people's lives, forcing many of us to exit careers and meaningful life passions. Some of us are home or bed bound, others feel like ghosts struggling to get by in a world that doesn’t see us.

Naturally, many have become advocates for this ignored and stigmatized disease in the face of our county’s failed public health response to the ongoing pandemic. 

They’ve set up impactful nonprofits, welcoming support groups, established grassroots mutual aid organizations to distribute masks and tests, and shared their harrowing health journeys in the media, and in Senate hearing rooms

But with a disease as debilitating and disabling as Long Covid, many advocates have had to not only give up their livelihoods, but also their important advocacy work. 

Whether their conditions worsened from the exertion of their efforts, or they were reinfected with Covid-19 doing in-person advocacy work — like one advocate who recently traveled to Washington D.C. for a Senate hearing — some have had to retire from their passionate advocacy, creating an endless catch-22. 

It is clear that people with Long Covid and the disability community at large need more allies to support their cause. 

After years of reporting on Long Covid and speaking with hundreds of patients, I’ve observed a few ways allies can help.

And thanks to a generous sharing of recommendations, I’ve compiled six ways to become an ally to people with Long Covid and other related diseases:

1. Wear a respirator in essential public spaces

Even though the COVID-19 Public Health Emergency ended in May 2023, SARS-C0V-2 still circulates widely around the world with incessant surges and is still considered a pandemic by the World Health Organization. 

Wearing a respirator in essential public spaces is an important way to show ally-ship to people with Long Covid and other disabilities. These spaces include all public transportation, pharmacies, healthcare facilities, grocery stores, post offices, and other spaces that people must enter in their day-to-day lives.

A recent gold standard review of over 100 studies found that masks are effective against airborne pathogens like SARS-C0V-2 and help curb the spread of COVID-19. 

Masking in these spaces will help reduce the risk of you, your loved ones, and your community getting sick, too. 

The action also helps normalize masking and shows solidarity, especially in the face of potential mask bans that would eliminate one of the few protections disabled people have from COVID-19.

2. Educate yourself on Long Covid, ME/CFS, and Disability

Many disability and chronic illness advocates have noted that disability comes for everyone at some point in their life — why not acknowledge this reality and help set up a more disability-friendly world before you enter it? 

Begin with watching the award-winning documentary “Unrest” (2018) by filmmaker Jen Brea (free on YouTube) about myalgic encephalomyelitis (ME), a neurologic disease that overlaps with and shares symptoms with Long Covid. 

1. Viral persistence 

2. Latent reactivated virus 

3. Autoimmunity

4. Inflammation. 

Don’t fall for government minimization, the science is clear: Long Covid affects every organ system in the body, including your brain.

It doesn’t have any effective treatments and can last for years and for many, may likely last for  life. Many survivors of  SARS 1 are still debilitated more than 20 years later.

Now is also a great time to be educating yourself about disability justice.

Whether you’re pulled toward books, documentaries, or comics —  there’s no shortage of content to help you better understand the importance of collective liberation. 

3. Donate your time and/or money to Long Covid advocacy groups and local mask blocs

Many advocacy groups and organizations are led entirely by disabled and other marginalized people. Help lighten their burden whether participating directly by volunteering or indirectly by donating to their efforts.

These advocacy groups include:

Numerous other organizations exist in and outside of the United States — search for them and local mask blocs on the COVID Action Map. Once you’re involved, you’ll know the most pressing advocacy efforts and can help organize around them.

Mask blocs are local mutual aid grassroots organizations that distribute free masks, COVID-19 tests, and other supplies to their communities. 

They are important groups to support, especially since our government has failed to provide these essential, life saving tools.

4. Be an inclusive organizer or employer

The pandemic allowed many people with Long Covid and other disabilities to participate in public life through virtual events — but these events have fallen to the wayside as society has rushed to get “back to normal.” 

Host virtual hybrid options for your events so people can tune in from home. And when planning in-person events, consider upgrading your venue’s ventilation system for cleaner air, or bring in portable air filters to clean the air and lessen the spread of COVID-19. 

For more tips on inclusive and Covid-safer event planning, read this guide by Clean Air Club founder and All Kinds Accessibility Consulting founder, Shelby Seier. 

As an employer, consider flexible accommodations for your employees (including virtual events for all professional events), offer remote work options, and improve your indoor air quality. 

Read more about Long Covid in the workplace in this “manager’s guide” by Harvard Business Review.

5. Get involved with research

Even though you may not have Long Covid yourself, you may be able to participate as a control in important studies

This research is vital as it helps scientists understand the effects of Long Covid and Covid-19 infection on the body. Sometimes there are perks and pay, but most importantly, you’ll be helping advance the science of Long Covid and other infection associated diseases. 

You can also support, donate, or coordinate grants to patient-led research, like the Patient-Led Research Collaborative and Remission Biome, or to private research groups including the Polybio Research Foundation, the Bateman Horne Center, the Workwell Foundation, and the Open Medicine Foundation

6. Believe people with Long Covid and ask how you can help them

People with Long Covid and related diseases experience incredible stigma and have been largely abandoned by society. Getting allyship from even our friends and family can be difficult. 

At bare minimum, believe people with Long Covid. As one advocate recently said:

We’re screaming from the rooftops trying to prevent more suffering.” 

Supporting people with Long Covid can come in many forms. Find out what specific needs they may need by asking what accommodations might be helpful when you make plans. 

Help by offering to test before seeing your friend with Long Covid.

Give grace to us when we have to cancel plans because of symptom flares or high levels of COVID-19. Don’t give up and play the long game. Many of us with Long Covid and other disabilities have been abandoned by friends, family members, and loved ones who are unwilling to make an effort to understand or accommodate our disease.

Help destigmatize Long Covid by talking about it and sharing stories and acknowledge the pandemic in the present tense. 

And lastly, always be considerate when assessing COVID-19 risk. 

As journalist Ed Yong wrote:

“Instead of asking “What’s my risk?,” I’ve tried to ask “What’s my contribution to everyone’s risk?”

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