This is a MedPage Today story.
As patients with long COVID-19 scour the internet desperate for relief, physicians are concerned they may stumble upon an unproven treatment plan touted by a group known for pushing the anti-parasitic drug ivermectin.
The Front Line COVID-19 Critical Care Alliance (FLCCC) lists about 20 medications, vitamins and therapies as part of its "i-recover" protocol for long COVID-19, with ivermectin at the top of the list.
The group said it developed the protocol to aid the large numbers of patients suffering from lingering symptoms and a lack of available treatment options. However, doctors treating patients at hospital-based centers for post-COVID care have been quick to call out the dangers of the the treatment plan.
"Recently I saw the FLCCC Long COVID 'protocol' & oh boy is this some crazy non-evidence based prescriptions: HIV meds, steroids, diuretics, & of course ivermectin," Dr. Nick Mark, an intensive care unit doctor in Seattle, wrote on Twitter.
"What concerns me is FLCCC presenting 'protocols' as proven treatments for long COVID," he added. "Throwing 20 medications (9 are prescription) at a problem with minimal (or no) evidence is irresponsible. As we will see, this is both unethical & likely harmful."
In an interview with MedPage Today, Mark said presenting the protocol as a cure for something that potentially afflicts millions of people and telling those people to find someone who will prescribe the list of medications for them, shell out thousands of dollars for those medications and then take those medications is "profoundly irresponsible and unethical conduct."
The FLCCC protocol includes first-, second- and third-line therapies, along with "optional adjunctive therapies." Ivermectin is at the top of the list of first-line treatments, along with the steroid prednisone, the opioid antagonist naltrexone, omega-3 fatty acids and vitamin D.
The antidepressant fluvoxamine and the statin atorvastatin are listed as second-line treatments, and the HIV drug maraviroc is a third-line therapy. A test called InCellDx is also recommended as a third-line strategy, but Mark said there's very limited data behind the test, which assesses 14 types of cytokines, or inflammatory cells.
There's no evidence to start or stop any therapy based on the results of the test, Mark said.
"Optional, adjunctive" therapies include compounds like curcumin, nigella sativa, vitamin C, melatonin, and quercetin. Also in this group are H1 and H2 receptor blockers, the asthma drug montelukast and the anti-androgens spironolactone and dutasteride.
Mark called it a "kitchen sink" approach, one that can be harmful for both long COVID-19 patients as well as patients who are already using certain medications in the treatment plan for legitimate reasons.
For instance, some of the most common symptoms of long COVID-19 include muscle weakness, fatigue, shortness of breath, anxiety, depression and post-traumatic stress disorder (PTSD), Mark said. He questioned what would happen to patients who may take a high-dose steroid on the FLCCC's list of medications. It could worsen their muscle weakness or pre-existing diabetes, he said. It could also make it harder for them to sleep or contribute to depression.
In addition, there's little evidence supporting these treatments, particularly ivermectin, said Dr. Thomas Walsh, an infectious disease physician at Allegheny Health Network in Pennsylvania.
The drug has developed almost a cult-like following during the pandemic, he said. Increases in calls to poison centers and people ingesting the drug without a prescription -- and in doses for large animals like horses and cattle -- have been especially dangerous and concerning, he added.
Walsh said other COVID-related treatment protocols issued by FLCCC have similarly lacked an evidence base.
Walsh likened the group's approach to treating long COVID-19 to "throwing spaghetti against the wall" and called it "tremendously dangerous and unethical."
"The main takeaway is you need to contact your physician [who] can help guide you through the workup of these symptoms," Walsh said.
There are clinics that specialize in treating post-COVID patients, he said. Allegheny Health Network deploys a multi-disciplinary team that includes pulmonologists, neurologists, behavioral medicine specialists and infectious disease physicians to help create a personalized approach to care for patients.
"There's obviously the concern that people are going to turn to the internet and social media," Walsh said. "It's easy to go down that rabbit hole."
But, he added, it's important to remember that there is a tremendous amount of work being done to address post-COVID symptoms and that there is also enormous interest in the different strategies that may prove effective in treating these symptoms.
Long COVID-19 is likely not just one disease, Mark said. Post-ICU syndrome has been known for many years prior to the pandemic. But that's different from someone who had mild COVID-19 but developed persistent symptoms. Depending on what an individual's specific problems are, there are going to be different treatments for them, he said.
The FLCCC did not immediately return a request for comment. However, the group does state the following about its long COVID-19 treatment plan: "As with all FLCCC protocols, we must emphasize that multiple aspects of the protocol may change as scientific data and clinical experience in this condition evolve."
That's concerning to to Mark, who noted people who may feel desperate, and may believe they have to chose between the FLCCC protocol or nothing.
"It's irresponsible to dangle a magic cure for these symptoms," Mark said.