After years of organizing and advocacy by people suffering autoimmune injuries from the COVID-19 vaccine, one of the world’s top scientific journals reports on the existence of “Long Vax.”
Mainstream publications and regulatory agencies have buckled to public pressure to admit the COVID-19 vaccine can cause injuries such as myocarditis and pericarditis — but until recently, they’ve published little or nothing about the substantial number of people suffering from autoimmune disease after vaccination.
However, on Tuesday, the journal Science published an article confirming that COVID-19 vaccines are linked to autoimmune disorders, such as small fiber neuropathy and postural orthostatic tachycardia syndrome (POTS).
“We’ve been screaming from the top of our lungs about these things happening,” Agnieszka Wilson, founder of #CanWeTalkAboutIt told The Defender. “And finally, slowly, it’s being acknowledged.”
The #CanWeTalkAboutIt campaign is a global effort to break the silence around injuries from the COVID-19 vaccine.
Suzanna Newell, former board member of the vaccine-injured patient advocacy group React19, told The Defender:
“I am extremely grateful that doctors and medical institutions are now willing to talk about adverse reactions. [They] should have been listening to the injured. We even have many injured medical professionals among the injured who have had trouble being heard.”
Science reported that in addition to abnormal blood clotting and heart inflammation, the COVID-19 mRNA vaccines give rise to “another apparent complication”:
“[This] debilitating suite of symptoms that resembles Long Covid, has been more elusive, its link to vaccination unclear and its diagnostic features ill-defined.
“But in recent months, what some call Long Vax has gained wider acceptance among doctors and scientists, and some are now working to better understand and treat its symptoms.”
According to Science, Long Vax cases “seem very rare.” They include a wide range of symptoms such as persistent headaches, severe fatigue and abnormal heart rate and blood pressure.
The symptoms can begin to appear within hours or weeks after vaccination and are difficult to study, the authors of the article said.
Science reported that increasing numbers of researchers are making diagnoses that include small fiber sensory neuropathy, which causes tingling or electric shock-like sensations, burning pain and blood circulation problems, and POTS — a condition that affects blood flow and can result in symptoms such as lightheadedness, fainting and increased heartbeat — that appear when standing up from a reclined position.
Post-vaccination symptoms could have features of one or both conditions. People with long COVID can suffer similar symptoms, according to the article.
Small sensory fiber neuropathy and POTS also are associated with other vaccines such as Gardasil, Merck’s human papillomavirus (HPV) vaccine.
Commenting on the article, Substacker Igor Chudov wrote that the authors acknowledge the suffering, but also minimize it, falsely asserting that it is rare. “It goes on and on about how ‘rare’ vaccine injuries are.”
Brianne Dressen, founder of React19, said that despite the fact the article qualifies some of its key claims, she sees it as an important step toward getting these conditions more widely recognized.
Dressen told The Defender:
“Science Magazine is speaking to an audience that the rest of us who have been pigeonholed into this corner can’t speak to because they don’t even know we exist. We’ve all been censored to no end. So how are we going to reach those people?
“They’ve been hammered over and over again in outlets like Science Magazine — which is kind of ironic — with the idea that the vaccines are wonderful and there’s no possible way that anything bad can happen …
“So if we ever get an opportunity to put a little bit of content out there in their lane for them to question even just a little bit what’s going on around them, then we’ll be able to pull them back over to, you know, to the truth.”
Vaccine-related autoimmune disorders are underreported
Scientists at the National Institutes of Health (NIH) were attempting to study and treat patients with Long Vax symptoms in 2021. They published a preprint report on their work, but the study was abruptly halted without explanation and the NIH has stonewalled attempts to discover details about what the agency knew early on.
Science also cited previous and forthcoming research by Sujana Reddy identifying post-vaccine POTS, and a study published in Nature Cardiovascular Research by researchers from Cedars Sinai Medical Center last year that linked COVID-19 and the vaccine to POTS.
Other peer-reviewed research reported similar links and has revealed a wide range of immune system and neurological effects from the COVID-19 vaccine.
Numerous people with autoimmune disorders from the COVID-19 vaccine have also shared their stories with The Defender. Some reported difficulties in submitting their health information to the Vaccine Adverse Event Reporting System (VAERS).
A total of 1,569,668 reports of adverse events following COVID-19 vaccines were submitted between Dec. 14, 2020, and June 23, 2023, to VAERS.
The latest available data from VAERS show 770 reports of POTS with 578 cases attributed to Pfizer’s vaccine, 160 reports attributed to Moderna’s and 31 reports to Johnson & Johnson’s.
“Under-reporting is a known and serious disadvantage of the VAERS system,” according to VAERs expert Jessica Rose, Ph.D.
Rose wrote, “Unfortunately, we can never really know how many people are suffering from adverse events. Reports can go missing, reports can remain in temporary VAERS ID limbo or never get filed in the first place.”
Scientists hesitantly speak out
“You see one or two patients and you wonder if it’s a coincidence,” Anne Louise Oaklander, M.D. Ph.D., a neurologist and researcher at Harvard Medical School, told Science. “But by the time you’ve seen 10, 20,” she continued, “where there’s smoke, there’s fire.”
In addition to Oaklander, a top researcher on small fiber neuropathy, Harlan Krumholz, M.D., a Yale cardiologist, Sujana Reddy, D.O., an internal medicine resident physician at East Alabama Health, Tae Chung, M.D., a neuromuscular physiatrist who runs a POTS clinic at Johns Hopkins, Matthew Schelke, M.D., a neurologist at Columbia University and Lawrence Purpura, M.D., MPH, an infectious disease specialist at Columbia University, and William Murphy, Ph.D., an immunologist at the University of California, Davis all commented on their ongoing research on autoimmune illness associated with COVID-19 vaccination.
The article also reports that “regulators in the US and Europe say they have not found a connection between COVID-19 vaccines and small fiber neuropathy or POTS.”
But even Peter Marks, M.D., Ph.D., director of the U.S. Food and Drug Administration’s Center for Biologics Evaluation and Research, which has denied and downplayed the existence of vaccine autoimmune side effects, conceded to Science, “If a provider has somebody in front of them, they may want to take seriously the concept [of] a vaccine side effect.”
German Minister of Health Karl Lauterbach has “acknowledged that Long Covid-like symptoms after vaccination are a real phenomenon,” Science also reported.
Marks told Science he worried “the sensational headline” about vaccine side effects could “mislead” the public. And several other researchers quoted in the article also expressed concern that their research could “undermine trust in COVID-19 vaccines.”
Dressen said researchers are hesitant to speak out because it carries great risk.
“There is not a single person, whether they are new to the game or whether they’ve been in this for decades, there’s not a single person that when they do step across that line and they do speak out, that they don’t get punished,” Dressen said.
She added, “There’s not a single person that gets hailed a hero and money flows and their research happens. There’s always repercussions. And these researchers knew that, right? Which is why they came out together and they came out in force.”
The power of patient advocacy
Dressen also told The Defender that doctors and researchers are finally speaking out because of the work being done by vaccine-injured patients.
“The interesting thing about these researchers though,” she said, “is that they too had to be deprogrammed. And that happened because of … the patients [who] ended up in their offices,” she said.
“The majority of the advocacy that happened to get these researchers to where they were willing to speak out, it happened on the ground floor with their own patients. So, you know, that’s the power that the patients have.”
Newall, who suffers from COVID-19 vaccine-related autoimmune disease, said:
“The best advice and support I have had about my reactions have come directly from other injured. They have been a lifeline for me. I knew to ask for a skin punch biopsy only because other injured people had told me to based on my symptoms.
“Even knowing what to ask for, the first neurologist wanted to wait and run other tests because he said small fiber neuropathy doesn’t normally present the way I was presenting. I told him we are in unchartered [sic] waters learning as we go, so please run the test.
“Finally after months of waiting, he tested me and I was positive for small fiber polyneuropathy.”
Immune overreaction to spike protein
The article hypothesizes that the Long Vax symptoms might be caused by an immune overreaction to the SARS-CoV-2 spike protein. Science wrote:
“One theory is that after vaccination some people generate another round of antibodies targeting the first. Those antibodies could function somewhat like spike itself: Spike targets a cell surface protein called the angiotensin-converting enzyme 2 (ACE2) receptor, enabling the virus to enter cells.”
Bernhard Schieffer, M.D, Ph.D., a cardiologist at the University of Marburg, is also quoted:
“The rogue antibodies might also bind to ACE2, which helps regulate blood pressure and heart rate. … If those antibodies disrupt ACE2 signaling, that could cause the racing heart rates and blood pressure swings seen in POTS.
“Small fiber neurons also have the ACE2 receptor on their surface, so in theory rogue antibodies could contribute to neuropathy.”
Rose told The Defender that “molecular mimicry” is a possible action for spike-induced autoimmunity. Molecular mimicry refers to a significant similarity between pathogenic elements contained in a vaccine and some human proteins.
According to Nature, this similarity may lead to immune cross reactivity, where the reaction of the immune system toward the pathogenic antigens may harm the similar human proteins, essentially causing autoimmune disease.
‘Needless gaslighting’ has to end
Vaccine-injured advocates say that much more research into these types of adverse events is imperative.
“This is just one of the many injuries and many side effects that they write about in this article. There’s so much more work to be done in the area, so much more attention to be given to a lot of people who are suffering today,” Wilson said.
Newell said that when vaccine-injured can get access to early treatments, they are more likely to recover.
“But, that requires acknowledgment,” she said, adding, “Just like Guillain-Barré [syndrome] is recognized as a vaccine reaction, we need small fiber neuropathy and POTS to be recognized as well.”
She added:
“Had there been a medical and financial safety net along with processes to accurately research the injured and adequately support us, we would be much farther along than we are and so many wouldn’t have had to needlessly be gaslit at the doctor’s office with all of these new symptoms.
“I wish those of us who were not using the medical system prior to our Covid vaccines and were now suddenly showing up with debilitating and scary symptoms would have been at the very least researched.
“We needed acknowledgment even though our truths are uncomfortable. It has been a painful and lonely ride that I would not wish on anyone. We need to be able to talk openly about reactions because what doesn’t get talked about leads to shame and isolation. Isolation can lead to suicide. We have seen far too many injured take their lives.
“We have waited years because our reactions might cause vaccine hesitancy. That has delayed progress. We are part of the science. The medical world needs to study our reactions to make this brand-new vaccine safer for all people.”
Science reported that a few university-sponsored research projects are moving forward. Yale’s LISTEN study will examine both long COVID and Long Vax cases.
React19 also plans to distribute small grants for studying immunology, biomarkers, and other features of post-vaccine illness. “Even modest support matters,” Krumholz told Science, because “it’s incumbent on us to produce preliminary data” to win over funders with deep pockets.
“The deep-pocketed funders of Covid vaccines had no problem pouring billions into them without any preliminary data — but helping their victims is not one of their financial priorities,” Chudov commented.
He added, “Thus, the researchers helping the vaccine-injured operate with tens of thousands of dollars, while Pfizer shareholders enjoy their multi-billion windfall.”
Wilson, who is also a journalist who interviews doctors and scientists on her program, the “Aga Wilson Show,” added, “This is not a fight between the anti and the pro-vax. it’s a fight for people’s health.”
She said public health agencies should be responsible for creating better systems to track injuries and should be funding research to understand and treat them and stop them from happening again.
“We are in a very bad situation because the governments are not taking responsibility for this. This research needs to be funded,” she said.