Largest ‘Long Vax’ Study To Date On Post-Covid-19 Vaccination Syndrome

Of the 241 online survey respondents who indicated that they were suffering from post-Covid-19 … [+] vaccination syndrome (PVS), 71% reported experiencing exercise intolerance, 69% excessive fatigue 63% some kind of numbness, 53% brain fog and 63% neuropathy. (Photo by Peter Byrne/PA Images via Getty Images)

PA Images via Getty Images

Since the Covid-19 vaccines first reached the market in late 2020, lots of unsubstantiated vaccination side effect claims have emerged such as assertions that Covid-19 vaccines can turn you into a gigantic magnet. While such unsupported claims really shouldn’t stick in any way, one set of potential Covid-19 vaccine side effects certainly deserves more attention and scrutiny than it’s been getting. These are the post-vaccination syndrome (PVS) side effects that some people have continued to experience long after they were vaccinated, hence the “Long Vax” nickname for PVS. Amidst all the fanfare that Covid-19 vaccines have been getting for preventing many, many, many deaths and severe Covid-19 outcomes around the world, those suffering PVS may have been feeling like no one is really listening to their stories. That’s why a team of researchers primarily from the Yale University School of Medicine began what they aptly named the LISTEN study, which stands for the Yale Listen to Immune, Symptom and Treatment Experiences Now study. And this research team recently posted a manuscript on medRxiv describing what’s now the largest study to date on PVS: a sample of 241 surveyed people.

Now, 241 may not seem like a super large number, given how many people around the world have been vaccinated against Covid-19, and posting a manuscript on medRxiv can be kind of like posting a video on YouTube. The manuscript did describe PVS as “rare.” And anyone with Internet access and a keyboard can in theory post a manuscript on such a web site. The manuscript hasn’t gone through the scientific peer-review process that publications in respectable scientific journals have. So take the results from this study with at least 241 grains of salt.

Nevertheless, 241 people is still much larger than a case report and other samples of PVS sufferers that have been reported previously. It’s how many people were in the sample described in this LISTEN manuscript with 80% of them being women, 87% of them being white, 88% of them being from the U.S. and half of them being younger than 46 years of age. These were folks who had responded to the LISTEN online surveys that were administered in November 2022 and July 2023—after being recruited via the Hugo Health Kindred, an online patient community—and reported suffering at least one of 96 different possible PVS symptoms listed in the survey. The research team—consisting of Harlan M. Krumholz, Yilun Wu, Mitsuaki Sawano, Rishi Shah, Tianna Zhou, Adith S. Arun, Pavan Khosla, Shayaan Kaleem, Anushree Vashist, Bornali Bhattacharjee, Qinglan Ding, Yuan Lu, César Caraballo, Frederick Warner, Chenxi Huang, Jeph Herrin, David Putrino, Danice Hertz, Brianne Dressen, and Akiko Iwasaki—excluded anyone who also reported having Long Covid.

Brain fog describes a feeling of confusion, forgetfulness, and a lack of focus and mental clarity. … [+] (Photo: Getty)

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Of the 241 survey respondents who matched these criteria, 71% reported experiencing exercise intolerance, 69% excessive fatigue 63% some kind of numbness, 53% brain fog and 63% neuropathy. Neuropathy, by the way, is when you experience some kind of nerve pain, typically a stabbing, burning or tingling sensation, which obviously is not very pleasant. By the way, it wasn’t as if these were isolated symptoms, although many of these symptoms can leave people feeling quite isolated, as will be described later. Half of the respondents reported experiencing 22 or more different PVS symptoms. Yes, 22 or more is not exactly a small number of symptoms.

The vast majority of these survey respondents had received the Covid-19 mRNA vaccines with 127 (55%) getting the Pfizer-BioNTech one and 86 (37%) getting the Moderna vaccine. The symptoms began after the first dose of the vaccine for 44% of the respondents, the second dose for 33%, the third dose for 14% and later subsequent doses for 9%. These symptoms began fairly soon after vaccination too with 50% of respondents saying that they first noticed problems within three days of getting vaccinated. And true to the “Long Vax” nickname, respondents indicated that these symptoms have persisted for quite a long time—ranging from 40 to 1058 days with a median of 595 days, meaning that well over half of them had been suffering such symptoms for over a year-and-a-half.

As you can imagine, feeling like your brain is in a fog or suffering stabbing pains to your arms or legs is going to affect your daily life. Of the survey respondents, 93% reported feeling unease, 82% fear, 98% rundown, 81% overwhelmed by worries, 76% anxiety, 80% helplessness, 76% depression, 72% hopelessness and 49% worthlessness at least once during the week prior their completing the survey. Moreover, 91% reported suffering sleep problems and 86% reported having pain that interfered with the daily activities.

The LISTEN survey results also suggested that others around the respondents weren’t really listening enough to the “Long Vax” sufferers. Indeed, 41% reported that they had fewer than three people to rely on for help, and 36% indicated that it was challenging or very challenging to get assistance for tasks such as shopping or visiting the doctor. Moreover, 20% often felt a lack of companionship, 23% felt left out, 32% felt isolated and 12% felt lonely often or always.

And here’s the problem with nearly any medical condition that hasn’t gotten enough attention: typically not enough time, effort and resources have been allocated to establish effective and scientifically-supported treatments for such conditions. That’s clearly been the case with CVS. As a result, it’s left the survey respondents trying all sorts of stuff in what can appears to be rather scattershot matter. All in all, respondents reported giving a median of 20 different treatments a shot. Yes, that’s right, half of the respondents have tried 20 or more different treatments in what may have been largely futile efforts to deal with their PVS symptoms. This included 48% trying oral steroids, 25% gabapentin, 20% low-dose naltrexone, 18% ivermectin, 11% propranolol, and 11% bronchodilators (11%) as well as 51% limiting their exercise or exertion, 44% quitting alcohol or caffeine, 44% hydrating themselves and increasing salt intake and 39% fasting intermittently.

Add this latest manuscript to the slowly growing body of evidence that Covid-19 vaccination can in some cases result in PVS, including the case studies and reports that I covered for Forbes back in July. This manuscript still has to go through the rigors of scientific peer-review. So keep listening for updates. Meanwhile, the LISTEN study has continued to recruit participants. As mentioned previously, it’s still not clear what percentage of people vaccinated against Covid-19 have ended up suffering PVS. Regardless, no matter how rare such side effects may end being, anyone truly suffering problems from Covid-19 vaccines deserves at least a listen or two or more.

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