Is it long COVID or long vax? Does the government want to know?

Millions of Americans are still suffering months or even years after they were infected with COVID. Long COVID as it’s commonly known is a serious and poorly understood problem. But there is also growing evidence that the COVID vaccine could cause a similar disease. 

We need our government health agencies to take a serious look at this condition and stop stigmatizing doctors and patients who report these findings so we can get people the help they need. 

We are critical care physicians with the FLCCC Alliance (the Front Line COVID-19 Critical Care Alliance) who have treated COVID patients throughout the pandemic. One of us recently opened a private practice focused on patients with long COVID.

In two years, the practice has evaluated and treated over 1,000 individuals. Approximately 70 percent of these patients said their reported symptoms occurred in the minutes, hours, days and weeks after COVID vaccination, as opposed to after COVID infection. This could be tied to a new condition that’s flown under the radar until recently.

This syndrome, dubbed “long vax,” is just starting to make its way into the medical literature. Dr. Harlan Krumholz at the Yale School of Medicine published a survey of 241 patients who described post-COVID vaccination symptoms of exercise intolerance, excessive fatigue, numbness, brain fog and neuropathy, a nervous system disorder that can cause pain, tingling sensations, numbness or weakness. Long COVID patients were excluded from the study, which is now undergoing peer review. 

The concern is that our findings, Krumholz’s study, and any reports of adverse events from COVID-19 vaccination, will be subject to the same institutional censorship we saw throughout the pandemic. Suppressing this information risks creating an even bigger disaster.

There is widespread alarm about autoimmune diseases reaching “epidemic levels.” Much of this is attributable to COVID, and there is mounting evidence that COVID vaccinations may have contributed to this trend as well. Similarly, autoimmune diseases, particularly autoimmune rheumatic diseases, can increase a person’s chance of developing long COVID. This means we could see an explosion of long COVID — and long vax — in the months and years ahead.

America’s health agencies need to snap into action to help study this problem so we can better understand and treat these conditions. Unfortunately, there doesn’t seem to be much hope of this happening. The National Institutes of Health is fixated on studying the effect of Paxlovid, an antiviral COVID treatment, to treat long COVID and long vax, despite it having no proven effect on autoimmune disease.

At the same time, court cases such as Murthy v. Missouri are challenging the pressure the Biden administration put on social media companies to suppress discussion of alternative COVID treatments while they pushed the mass vaccination campaign. 

As physicians who have dedicated our lives to healing people, we find it hard to stomach that the government has abused its power in this way. Our health agencies have been coopted by industry and political forces, leaving millions of people vulnerable to injury, suffering and death, in many cases without any recourse. Until our leaders in Washington step up and take these problems seriously, it’s up to physicians and affected patients to share our knowledge and forge solutions.

To be sure, the Senate HELP Committee recently took up the issue of long COVID, but it simply was not a serious effort. Without an honest accounting of what went wrong, the last thing we should do is give the government more power over our healthcare decisions.

Pierre Kory, MD is president and chief medical officer and Paul Marik, MD is chief scientific officer at the Front Line COVID-19 Critical Care Alliance.