Introducing Long COVID Connection: A New Publication on Medium
Bringing together research, personal narratives, and other stories about Long COVID and related post-viral syndromes.
There are countless ways in which the COVID-19 pandemic changed — and continues changing — the landscape of healthcare, and even more ways in which it continues intimately impacting individual lives. While past pandemics undoubtedly also reverberated through people’s lives in myriad ways, one notable difference between this one and most historical ones is that so many hundreds of thousands of people never truly, fully recovered from the original disease. I’m speaking, of course, of long COVID.
The lingering, persistent symptoms of long COVID are not the first example of a syndrome that lasts for months or years after an infection. Post-polio syndrome, though it takes decades to develop, has been well documented as a post-viral chronic condition, and post-treatment Lyme disease syndrome is an example of a condition following bacterial infection that has long-term, debilitating symptoms.
We also know that both bacterial and viral infections can trigger development of auto-immune conditions, such as Guillain-Barré syndrome, and that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can result from infections of Epstein-Barr virus, Ross River virus, or Coxiella burnetti, among other causes that aren’t fully understood.
But it took years, often decades, for the medical establishment to recognize many of these conditions, and even today, the people suffering from them aren’t always believed or respected, but instead subject to medical gaslighting about their symptoms — or even the existence of their condition.
Long COVID stands out in part because it is impossible to ignore, even for those who nevertheless tried to minimize it, and despite those who continue trying to pretend it’s not as huge an issue as it really is. Because long COVID results from a pandemic pathogen that initially infected so many people so quickly, it has been wreaking its havoc in waves across large swaths of the population in a much shorter period of time and in far greater numbers than the isolated, scattered cases that tend to occur with other chronic illnesses.
Too many people were reporting too many similar lingering symptoms to be dismissed as a whole, and the researchers who quickly began studying post-COVID sequelae soon validated the early anecdotal reports. The fact that so many people began reporting long COVID symptoms from the earliest days of the pandemic also meant it received more attention and, to some degree, more respect from the medical establishment sooner than other post-infection chronic illnesses have.
Yet far too many people — including many within healthcare — still don’t take long COVID seriously, or even believe it exists at all, and our ability to precisely define it and to understand it remain as frustratingly enigmatic now as when it first began appearing in medical studies and news reports.
And meanwhile, new infections and diagnoses of long COVID continue to rise The latter is an ongoing silent pandemic that adds insult to the injury of the acute pandemic that has now all but faded from the headlines, even as infections rise again and so many people live every day with the demoralizing, draining, and disabling reality of long COVID.
The fact that so much of the country, even the world, wants to forget about the pandemic, to turn their eyes away from the real threat of long COVID, to pretend there aren’t thousands of people suffering from its effects among us… the fact that long COVID continues devastating people’s lives with few answers about how long it will last and no evidence-based treatments to ease symptoms, is the reason I felt it was important to create a publication dedicated exclusively to long COVID: Long COVID Connection.
The Vision for Long COVID Connection
My hope is that this Medium publication will become a place people can share their stories, read others’ stories, provide up-to-date information about new research, provide advice on coping strategies and supports, tell the stories of financial stress and ways to manage it — many of the things already shared in support groups, but open to the general public as well.
This is not the first publication about long COVID or the first attempt at creating a hub to bring together information and stories, and it won’t be the last. Nor do I expect it to replace any of the excellent resources that already exist, such as social media support groups, published books, support organizations, and initiatives like the The Long COVID Reader launched by Mary Ladd. This new publication will hopefully complement those resources and others, and I hope to learn from what others are doing as well.
To launch this publication, I have been speaking with people living with long COVID, with journalists who have been covering it since the early days of the pandemic, and with researchers and clinicians who refuse to give up on seeking answers and offering care even as they, too, deal with the frustration of having so little data. Long COVID Connection will be a platform to spotlight and share the lived experiences of people with long COVID, and a valuable source for disseminating science based long COVID information to the long COVID community, including caretakers, healthcare providers and other stakeholders.
While I personally have been fortunate not to experience long COVID or care for someone with it, I have experienced, and cared for someone, with short-term and long-term disability, and I understand the deep sense of loss that occurs when you suddenly cannot do all the things you could do even a week earlier. I understand the anger and other stages of grief that you cycle through from one day to the next, and I understand how it feels as friends peel away, or call and message less while you begin suspecting they don’t believe, or cannot really grasp, how much your life has changed.
I also understand how broadly diverse the experiences of long COVID are and how many communities and individuals affected by it are often not those whose stories are told in the few stories that still make it to the mainstream press. I will do what I can to seek out those stories and to encourage the same of the stable of writers I’m hoping to cultivate for Long COVID Connection. I hope to bring in non-professional writers — people living with long COVID, caregivers, clinicians, researchers, and others — who have an engaging story to tell, the exact kind of story Medium excels at hosting.
Those stories will fall into six main subcategories:
- News & Research — news about new long COVID studies or initiatives as well as no-nonsense, lay-language summaries of the latest studies coming out about long COVID and how to get involved
- Community Voices — personal stories sharing the lived experience of long COVID, both from those who are living with it as well as their caregivers and clinicians
- Daily Living & Family — anything and everything about living with long COVID, including its challenges, its impact on family and relationships, and living and dealing with grief and loss
- Money Issues — the financial stresses of long COVID as well as any suggestions for saving money, dealing with insurance companies, paying for healthcare, or finding new sources of income and other resources
- Challenges & Supports — both the difficulties that result from long COVID as well as coping strategies to help with them, both mental and physical
- Youth — anything about long COVID experience or research for children and teens living with it
A Curated Approach to News and Narratives
Cutting across all those stories will be common themes, such as the fact that we still lack so much information about what causes long COVID, how to treat it, and what the long-term outcomes are. It’s a novel virus, and clinicians and researchers are trying to understand it as much as any lay person is.
Of course, therein lay hazards as well. The fact that SARS-CoV-2 is a novel virus invites “novel” solutions that lack evidence and do little besides empty people’s wallets, as we’ve seen plenty of throughout the pandemic. But on top of that, any time a vulnerable population is suffering from a complex, enigmatic chronic illness that does not have an existing evidence-based, standardized protocol for effective treatment — the exact situation for long COVID — charlatans will step in with their snake oil to make a buck off “treatments” that are ineffective at best and dangerous at worst. So the risk of quackery is twofold for long COVID, a puzzling chronic illness resulting from a novel virus.
As someone who began my health reporting career reporting on vaccines, assessing research and health claims, and debunking false claims and pseudoscience, I will be paying special attention to any claims about treatments that lack bonafide evidence behind them. While Long COVID Connection will welcome stories from people who talk about non-medical practices that have worked for them individually, the only stories that will discuss actual treatments or drug protocols will require peer-reviewed evidence to back them up.
Through it all, as founder and editor of this publication, I will be selective in what’s published, curating quality over quantity and providing editing help to the writers to make it so. Despite nearly a decade and a half of reporting on health, I expect to learn from the long COVID community through this process as well, adapting the publication to be sensitive to their needs and providing not only what they want to see for themselves but what they want the general public to know and see and learn.
I hope you’re as excited about this publication as I am, and I’m eager to hear from you, the reader, as this gets off the ground. Let me know in the comments what you think so far and what you’d like to see. After all, this publication aims to be what you need it to be.
