We Don't Have to Let MAHA Goons Kill Long Covid Treatments

It's time for activist medicine.

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Every time the Trump administration does something reckless or cruel, our fellow liberals spend days shouting, “Inconceivable!” They keep using that word. I do not think they know what it means.

There are two kinds of people in this world: Those who have Long Covid, and those who don’t know they have it…

Yet.

So it’s heart-rending, but not surprising, to see this administration shutting down its Long Covid office and making research for treatments yet another causality in their strides to “Make America Healthy Again.” According to a recent piece in Politico, “as many as 23 million people have the illness, which can range in severity from mild to debilitating.” As Phillip Alvelda told Lynn Parramore last year, Long Covid isn’t just a condition that impacts a demographic. It’s debilitating entire generations of adults and children, and it would take an entire book to chronicle the damage it has already done to us—far more than the official 23 million.

As I’ve explained here, if you’ve had Covid, you likely have damage you don’t even know about yet. It will become more and more apparent with more infections. Odds are, you’ll need treatment for Long Covid one day. So this matters for you. Researchers have said, "The oncoming burden of Long Covid faced by patients, healthcare providers, governments, and economies is so large as to be unfathomable." To their credit, Politico has been one of the only news outlets to cover the closure of the office, a move that represents a larger shutdown on research that never delivered much of anything in the first place.

Unfortunately, this draconian move only magnifies the indifference and thinly veiled resentment we saw over the last four years, which included an NIH that bungled billions in research funds, an FDA that dragged their feet endlessly on off-label approvals for treatments, and a NIAID director who declined to require or even encourage masks at meetings with Covid survivors because it was so “traumatizing” for her personally to wear one.

While Bernie Sanders pushed for a moonshot that amounted to $1 billion in annual funding, that amount was less than our last presidential candidate’s campaign, a spectacle packed with twilighting celebrities and overpriced podcast sets. It’s hard not to feel abandoned when our leaders blow through a billion dollars on vibes, toss us by the wayside, and then still manage to blow up our phones every night and weekend demanding more of our money.

Despite all this, there’s a way forward. There’s still hope. It doesn’t lie in more research studies. It doesn’t lie in corrupt politicians. It lies in doctors and clinics choosing to do something bold.

Practice activist medicine.

There are dozens of promising treatments for Long Covid, and we’re going to talk about them along with the organizations still doing vital work. We don’t need drawn out clinical trials or studies at this point. We need doctors and clinics who are willing to listen to Covid survivors and do the work. We need them to cut their own red tape and lean hard into off-label prescriptions.

You might wonder, as I did, why it’s not happening.

As a piece in STAT explains, an off-label prescription should be simple for Covid survivors, but it’s not. It requires consultation with “dozens of healthcare providers” and it can take “a total of 18 months to find a willing prescriber.” Here, Julia Moore Vogel and Charlie McCone go on to say that “many physicians are uncomfortable prescribing off-label medications for Long Covid even though one in five prescriptions in the U.S. is written for off-label use.” They worry about side effects and, perhaps more realistically, liability. If you know anything about this condition, you know the side effects are worth a chance.

They lay out the cost of doing nothing:

We all prefer making decisions based on gold-standard clinical trials, but if we do nothing while we wait for that data to be generated, people with long Covid will continue to experience debilitating symptoms, loss of income, homelessness, and death. Further, in the absence of guidance, people with long Covid will continue to self-manage their condition, investing in costly treatments and unregulated supplements.

Of course, RFK Jr and his army of wellness gurus can't wait to start hawking all kinds of supplements to the tens of millions who don't know they have Long Covid and yet still suffer from the condition. The demand for nootropics and brain boosters is already off the charts, with a market projected to hit $5.32 billion by next year. So, there's the incentive for killing Long Covid research. They want everyone buying this crap. If you want further confirmation, consider that health influencers like Janette Nesheiwat and Dr. Oz will soon join Jr as the heads of public health, completing the goop trifecta.

In the short term, it's easier and far more profitable than actually supporting public health. And even though I've written about alternative treatments, I've also made it very clear that I wish we didn't have to do this on our own. But that's the state of things.

Vogel and McCone ultimately make a call that deserves a standing ovation, impoloring doctors to start “bringing treatment options, along with an assessment of their risks and benefits, to their patients,” and to create a “national registry collecting data on current off-label drug use.”

This work is already underway.

For starters, you can try services like RTHM and CURE ID that aim to connect patients with treatments without endless waits. (I'm not endorsing them. I'm just telling you they exist.) HealthBio, a startup working on immune diseases, is also testing drugs like maraviroc and atorvastatin. We have a range of options. We just need clinics to use them.

Investigative journalist Joshua Pribanic has written a letter with the Long Covid Action Project and other Long Covid groups to push for more emphasis on drugs that target viral persistence, and they’ve been developing a list of treatments. As Long Covid advocate Daniel Brittain Dugger has stated, we could repurpose drugs like Azvudine and Tenofovir Disoproxil Fumarate (TDF) to help address the immune system damage that Covid does. Over the last two years, several medical and scientific journals have supported their use as potential ways to treat and prevent this form of Long Covid. We've also seen drugs that help treat hypometabolism in the brain after Covid infections.

The Long Covid Action Project is also developing a list of drugs that desperately need clinical trials and faster deployment. They stress the need for monoclonal antibodies and antivirals like pemivibart, azvudine, ensitrelvir (Xocova), and sofosbuvir. Even without an official government mandate, doctors and clinics could still prescribe these drugs and share information about them.

We just need them to try.

I’ve spent a lot of time looking at alternative treatments.

Here’s what I’ve found:

Monoclonal antibodies show a lot of promise, and we have tons of them sitting on the shelves slowly expiring. Healthcare largely abandoned them during the first Omicron wave, but some of them remain effective in higher doses as postviral therapies. We've also found new ones. For example: A study in Nature offers 5B8 as a therapy for fibrinogen, a protein in your body that binds to the Covid spike protein during infection. Afterward, that protein starts to behave differently, "forming pro-inflammatory blood clots" that lead to cardiac and brain dysfunction, especially in young patients with mild infections. It also suppresses your natural killer cells, weakening your immune system. So, damaged fibrinogen is the culprit behind a lot of the "mysterious" health problems we're seeing. As the authors show, "fibrin-targeting immunotherapy may represent a therapeutic intervention for patients with acute Covid-19 and Long Covid." The monoclonal antibody 5B8 "provides protection...without adverse effects."

The sooner you get it, the better it works.

A 2024 study in the American Journal of Emergency Medicine also found that the monoclonal antibody regeneron helped Long Covid survivors recover. Researchers "expressed surprise at the swift and comprehensive improvements observed in the patients," adding that "regardless of the duration of their Long Covid experience, significant progress was noted within a mere 5 days of receiving the Regeneron treatment." It might work because it helps your immune system eliminate residual amounts of virus or viral fragments, or it might replace damaged antibodies that attack your cells.

A 2022 study found that another monoclonal antibody, Sotrovimab, helped survivors with persistent viral loads after initial infection who were still reporting fatigue, chest pain, and trouble breathing months after infection. As the researchers note, the patients showed "rapid improvement of symptoms and inflammation markers as well as negative swabs."

Yet another 2022 study in Clinical Infectious Diseases found that a monoclonal antibody treatment called Leronlimab could help Long Covid patients recover by boosting their immune system in cases where Covid downregulated it, causing a drop in their CCR5 levels, a receptor found on a range of cells that fight pathogens, including your CD4 lymphocytes.

Interferon treatments, specifically Interferon-Lambda, have shown the potential to help with immune system problems and cognitive deficits (caused by brain inflammation) after Covid infections.

A 2022 study in Frontiers in Immunology found that high doses of immunoglobulin have shown "a significant to remarkable clinical benefit" in treating a full range of brain, heart, and lung problems in Long Covid patients. A major 2023 study in Frontiers in Neuroscience confirmed that immunoglobulin lead to significant improvement in neurological problems. As researchers in a third study on immunoglobulins and Long Covid state, we already use this therapy to treat a variety of chronic inflammatory diseases, as well as flu, HIV, and measles. (The NIH has/had included immunoglobulins in their new clinical trials.) So while these monoclonal antibodies might not save your life during early infection, they can help your recovery. There should be more trials and off-label use.

Next:

HIV drugs have also shown promise for helping Long Covid patients. A 2023 study in Clinical Infectious Diseases found that Tenofovir reduced someone's Covid risk regardless of whether they had HIV. A range of studies have supported the use of Tenofovir, Darunavir Ethanolate, and Azvudine for Covid. As we noted earlier, clinical trials are currently testing HIV drugs for Long Covid.

Another study in Antiviral Research found that cobicistat, used to boost HIV antivirals, also fights Covid and leads to a significant reduction in overall risk. The researchers found that higher doses work better. They also found that higher doses work better for ritonavir, one of the key components of Paxlovid. By the way, ritonavir has been used in HIV treatments since the mid-1990s.

The research on repurposed HIV drugs points to the potential of many antiretroviral therapy (ART) medications for Long Covid, given that viral persistence plays a large role in most cases. When you consider that Paxlovid itself contains an HIV antiviral, it sounds a little less extreme to repurpe existing drugs.

Finally, studies have shown that molnupiravir and metformin have shown effectiveness against Covid. In particular, a 2024 study in Clinical Infectious Diseases found that metformin prescribed in the early stages of a Covid infection led to a 41 percent drop in Long Covid risk.

Other research has revealed that sometimes it takes a combination of drugs to help patients recover. In a 2022 study in Clinical Infectious Diseases, researchers used nanopore technology to identify the specific variants patients were infected with and select the most effective treatments for that variant. In one case, a Long Covid patient with severe Paxlovid rebound got better after doctors prescribed Paxlovid again and added remdesivir. Nobody had thought to try that yet.

It worked.

These are the drugs that demand renewed attention, given that most research on Long Covid points to ongoing infection, viral persistence, and the disruption of your immune system. We especially need clinical trials that match drugs with specific conditions. Specialists are going to decide the right dose for prescription drugs. Generally, the research indicates that if a standard dose doesn't work, a higher dose might as long as it doesn't trigger side effects. A combination of drugs can work when a single drug fails.

What can you do if you don't have access to these drugs?

This:

A major 2023 study in Cells found that eriodictyol, a flavonoid extracted from yerba santa, can help with the brain inflammation caused by Covid infections that leads to cognitive deficits and fatigue. Researchers have found that at least part of the "brain fog" from Long Covid happens when the virus triggers immune cells to attack the brain. Eriodictyol can also be derived from citrus fruits, tomatoes, and grapes. As the authors explain, a range of flavonoids "have been reported to prevent neuroinflammation, provide neuroprotection, and reduce cognitive dysfunction, especially brain fog."

The authors of the Cell study list flavanoids liposomal luteolin, oleuropein, and sulforaphane as all beneficial for recovering brain function. They identify formulas called BrainGain and FibroProtek containing flavonoids that helped Long Covid patients with severe brain fog in previous studies. Those contain luteolin. They ultimately recommend ViralProtek, which combines several flavonoids, "alone or together" with eriodictyol.

These formulas aren't just managing symptoms. According to the studies, they're helping you clear viral remnants and rehabilitate your immune system. They inhibit your microglia and mast cells, immune cells that often drive the brain inflammation behind Long Covid cognitive problems.

What else?

A 2022 study in Molecules found promise in nattokinase, "a popular traditional Japanese food made from soybeans fermented by Bacillus subtilis var." Not so coincidentally, nattokinase also "decreases the plasma levels of fibrinogen," the same protein that drives thrombosis in Long Covid patients and indeed "has drawn central attention in thrombolytic drug studies," as well as tumor treatment. It also inhibits the replication of bovine herpes virus. Clinical trials have found no adverse effects from eating natto. In this particular study, the researchers found that nattokinase degrades the Covid spike protein, inhibiting infection. As they conclude, "nattokinase and natto extracts have potential effects on the inhibition of SAS-cOv-2 host cell entry."

Martha Eckey describes natto extracts in more detail here, along with benefits, recommended dosage, and possible side effects. Respondents to her survey reported the best results when they took Solaray's natto extract along with serrapeptase, an enzyme and commonly used drug in Japan and Europe that helps your body break down proteins. A large number of patients reported improvement after taking the natto-serra combination, often within a week or two. Many of them also benefited from adding lumbrokinase, an enzyme shown to facilitate healing.

Like natto, lumbrokinase breaks down fibrin. We're seeing a theme here. Any kind of treatment that breaks down fibrin, whether it's a monoclonal antibody or an enzyme, helps after a Covid infection.

Take a look for yourself:

Eckey discusses cromolyn for brain inflammation and neurological issues, and some people have said it helps with other problems. She also wrote this great post about protecting kids from Long Covid.

A lot of it also applies to adults.

Another surprising study in Viruses from 2021 found that grapeseed extract (V. vinifera) contained dozens of flavonoid compounds that inhibited viral replication, including for Covid. The researchers used concentrations from 500 μg/ml down to 10 μg/ml.

Even energy drinks could help you.

Studies have even found that taurine supplements can do a lot to reduce your Covid risks, including Long Covid. A 2024 study in PLoS One found that the amino acid can serve as both a biomarker and a target for treatment in Long Covid. As they write, taurine has already "shown benefits such as reducing depressive behavior, improving memory, and mitigating age-related issues by addressing cellular senescence, chronic inflammation, DNA damage, and mitochondrial dysfunction." It can play "a potential protective role" in "alleviating the burdens of PCC." If that weren't enough, "taurine supplementation has demonstrated diverse therapeutic properties, including anti-oxidation, anti-aging, antiepileptic, cytoprotective, and cardioprotective effects in many diseases." Yes, even taurine from energy drinks. (And I guess it's a good thing I drink them.) A standard diet contains about 40-400 mg of taurine per day. Medical use often starts at 6 grams a day.

Western countries are well behind the curve on these fronts. Japan now offers Xocova (ensitrelvir), arguably more effective than Paxlovid, and it's been sitting in the FDA approval queue for about a year. China approved HIV antivirals for Long Covid back in 2022. It's a little ironic that the catchphrase "do your own research," once levied against anti-vaxxers, is now used to insult Long Covid survivors and advocates trying desperately to find treatments. The difference is that we're not rejecting medicines. We're simply not getting them.

It’s time to stop the selective outrage at Trump’s assaults. It’s time to recognize that Long Covid is hurting everyone. It’s hurting every demographic that Democrats claim to want to help, including children.

Here’s the thing:

We don’t need a corrupt or compromised FDA, NIH, NIAID, or HHS to help us. We could move forward with the information we have.

We simply need everyone to recognize that this matters, it matters as much or more than any other problem we’re facing. We don’t have to let this administration kill any hope of Long Covid treatments.

That’s a choice.