Beyond the Curve: Dr. Peter Lurie's Covid-19 blog

Before she contracted Covid-19 at the end of 2021, Lindsey felt “amazing & energetic”, she told her fellow long Covid victims on the website Reddit this August. But after developing long Covid, she “can’t work, socialize, go outside for too long, think, remember, concentrate…” 

Lindsey tried to heal herself with supplements, meditation, healthy eating, and light activity, but nothing helped. “This isn’t life at all. I’m barely existing. I go to bed every night hoping I don’t wake up,” she wrote.

Lindsey is one of the millions of Americans currently suffering from long Covid, the fatigue, headaches, “brain fog,” and other stubborn symptoms that persist long after recovering from an initial Covid-19 infection. Many don’t have it as severely as her, but some have it even worse.

More than two years into the pandemic, there are far more questions than answers about this condition. We have no accepted diagnostic test, no accepted cure, no way of preventing who gets it (except for avoiding infection in the first place).  

Seeking medical help can be a nightmare. Family physicians are not prepared to deal with the bewildering symptoms patients report. At hospital long Covid clinics, the waiting list for appointments is typically many months.

Fortunately, most cases eventually resolve or recede enough that patients can resume a functioning life. That’s a relief for them, but little consolation for others who continue to suffer, sometimes for more than a year.

Ironically, the fact that long Covid can eventually fade away makes studying treatments harder. Suppose you administer a potential treatment to a long Covid sufferer who later reports feeling better. How do you know they weren’t going to get better anyway? Or, because many of the symptoms of long Covid are subjective, that the patient experienced a placebo effect?

Studies of potential treatments for long Covid that don’t use proper control groups are of limited value, more useful for attracting investors and coming up with questionable advertising claims, but less helpful for uncovering the truth. What are needed are the old standbys: blinded, randomized controlled trials.

It’s no surprise that in this confusing environment, with millions of patients desperate for help, some companies have taken advantage of how loosely dietary supplement claims are regulated to sell unproven long Covid treatments.

The most prominent of the “we’ve got the supplement cure for long Covid” crowd are probably the ivermectin hustlers at the Front Line Covid-19 Critical Care Alliance (FLCCCA). For several years, they’ve been promoting this drug for the treatment of Covid infections (and charging a minimum of $90 to write a prescription for it), even though the best-executed studies show it’s ineffective. (Duke University announced this summer that another controlled study again found ivermectin did not stop the progression of Covid-19 infections.)

With demand waning for ivermectin prescriptions to treat acute Covid infections, FLCCCA has pivoted to promoting the drug as part of a dietary supplement cure for long Covid. Its “I-Recover Long Covid Treatment” combines ivermectin with resveratrol, melatonin, vitamin D, omega-3 fatty acids, curcumin, aspirin, a prescription steroid, and fasting. “It’s like throwing spaghetti against the wall,” remarked a skeptical infectious disease expert.

It’s no surprise that in this confusing environment, with millions of patients desperate for help, some companies sell unproven long Covid treatments.

This August, FLCCCA published a 16-page background document for its long Covid “treatment” that conceded “studies evaluating treatment options are glaringly sparse.” That sparseness extended to the 106 references FLCCCA cited in its document, none of which showed that any of the components in its I-Recover supplement program successfully treated long Covid.

Some new players are looking to get into the game. The Amos Institute in Southern California has been offering an online $365 nutrition program “to help you fight Dementia, reverse Alzheimer's Disease and maintain your very best cognitive healthspan.” It’s now selling a $260 batch of 9 dietary supplements it calls “of particular importance for treatment of Covid long haulers.” Included are vitamins C and D, zinc, omega-3s, melatonin, and curcumin. Its evidence that this regimen successfully treats long Covid? None offered, and the Institute did not respond to an email inquiry about its evidence.

By contrast, Patients Medical of New York City says it treats long Covid patients with an intravenous drip of vitamins and other supplements. Five months ago, it introduced a $70 per month, 12-ingredient oral supplement called ImmuneFence “specially designed to support long haulers overcome residual Covid symptoms.”

ImmuneFence consists of what the company calls “tried-and-true components”: three vitamins, zinc, three probiotics and five other supplement ingredients. Evidence that it helps with long Covid? Patients Medical formulated this “patent-pending immune boosting formula,” its founder emailed us, “because I know there will be millions of Covid 19 long haulers looking for a great solution to help them with their immune health.” That’s bombast, not evidence of a “great solution.”

And now there are overseas companies eager to clear the low bar in the United States for selling long Covid supplements with dubious claims.

MGC Pharma, a firm with headquarters in Australia and a research partner in Tampa, claims that its dietary supplement called ArtemiC Support “has shown promise in treating long Covid.” This supplement, an oral spray, consists of small amounts of vitamin C and two herbal extracts, curcuma longa and Boswellia serrata, found in hundreds of other supplements.

The evidence for this “promise”? An unpublished, uncontrolled, unblinded, company-conducted study of 150 participants, who knew they were taking something claiming to help them and who self-rated their symptoms four times over the six-week study period. Surprise! Some of the participants (we don’t know how many) thought that some of their symptoms improved (we don’t know by how much, or whether it was enough to improve the quality of their lives). Reminder: a significant fraction of long-Covid patients improve on their own.

And then there’s a new herbal supplement called Tollovid from Todos Medical, a medical diagnostics company headquartered in Israel with an office in New York City.  Would you believe that a 32-year-old woman who had been suffering from long Covid for six months "took 12 Tollovid capsules daily for five days, and saw her symptoms completely resolve in three to four days"?

Among other individuals given Tollovid, some reported, according to the company, that “all of my symptoms were eliminated in one week,” “within two to three days of Tollovid, I was starting to feel really good,” and “Tollovid was a lifesaver.”

Todos Medical conducted an uncontrolled, open-label “market research study” with 28 long Covid sufferers who “generally followed” dosing directions and consumed at least two bottles of the pills (retail cost $300) over the course of the study. In the “preliminary results,” most of those suffering long Covid for less than nine months reported  relief in their fatigue and headaches (we don’t know by how much), while less than half of those suffering long Covid for at least nine months reported any improvement. Reminder: a significant fraction of long-Covid patients improve on their own.

Reliable results will take time. In December 2020, the U.S. Congress provided $1.15 billion in funding over four years for the National Institutes of Health (NIH) to begin studying long Covid. NIH is currently recruiting volunteers for its research. Click here to volunteer.

In the meantime, as long as the Food and Drug Administration doesn’t stop supplement companies from making unproven claims about their products’ effectiveness against long Covid, we’re likely to see more and more of these companies taking advantage of desperate long Covid patients.