We have ‘post-vaccination syndrome.’ We are tired of being used to score anti-vax points

We recently went viral.

Well, not exactly us — but people like us. We are participants in the Yale LISTEN Study, a patient-centered study to better understand long Covid and the adverse effects some patients have experienced post covid-vaccination. We are members of the post-vaccination cohort, a group that includes more than 250 patients.

In February, the LISTEN Study released a preprint of an investigation in a sub-group of 42 patients (not including us) that identified some biological features that may be associated with patient symptoms experienced following a Covid-19 vaccination —what the LISTEN Study research team refers to as post-vaccination syndrome. The patients in the preprint study experienced the onset of inexplicable symptoms shortly after receiving a Covid vaccination, the majority between one to 10 days. The symptoms reported range from highly bothersome to debilitating and include excessive fatigue, numbness, brain fog, neuropathy, insomnia, palpitations, myalgia, headache, and dizziness. The study’s findings revealed differences in the immune profiles among the PVS group compared with the healthy controls, as well as enhanced Epstein-Barr reactivation and elevated levels of circulating spike protein. The authors wrote that these findings “merit further investigation to better understand this condition and inform future research into diagnostic and therapeutic approaches.”

These measured words sparked a firestorm. One side of the vaccine debate is using us to score points. The other side is disregarding us entirely. Neither seems to be listening to us.

Before we go any further, we want to be clear. None of us authors were or are anti-vaccine. We have received many vaccines during our lifetimes. Covid vaccines have saved millions of lives worldwide. We recognize, as the Yale researchers have, that those who have reported PVS conditions are a small fraction of the population. But given the limitations in recognition, reporting, and lack of investigation to date, the frequency and scope of the numbers of people that have developed and are suffering from PVS are not known.

What the three of us do know is that we were healthy and active before we developed life-altering, debilitating health conditions shortly following a Covid vaccination. Our conditions have continued for years. One of us is now disabled, unable to work and on disability. We were all cautious to avoid exposure to Covid, had no signs or symptoms of previous Covid infection, and/or tested negative by PCR testing. We had no other known exposures that have been linked to our conditions. Our post-vaccination symptoms were significant, brand new, not related to any pre-existing conditions and unlike any symptoms we had experienced before. Our symptoms developed within an hour to days of receiving a Covid vaccination. This is the only factor we can identify, and the only factor that we all have in common, that could be responsible.

Our doctors agree. They have diagnosed our conditions as Covid-vaccine related and have ruled out other causes following multiple tests. We are grateful for their willingness to see beyond any social or political stigma of such a diagnosis.

But, again, that does not mean we or our physicians are anti-vax. Once the preprint was released, the three of us were frustrated to see the usual suspects in anti-vaccine circles quickly twist the findings to fit their narratives.

These activists, who frequently operate under the thin veil of being “pro-medical freedom” or “pro-safe vaccine,” style themselves as public-facing champions. Yet, when findings to be included in the LISTEN Study preprint were leaked, the anti-vax activists posted alarming and false claims about the findings based on speculation and rumors. Even before the preprint was released, they claimed it showed that people who suffer from long Covid actually have “vaccine injury,” which is not true. These actions revealed to us what we have long suspected: They don’t care about us. They care only about spreading their anti-vaccine views.

There are already unique obstacles to engaging in and publishing PVS research. The anti-vaccine activists’ behavior only deepens the contentiousness of PVS and hinders efforts for acceptance and research.

But pro-vaccine advocates have also disregarded us and our experiences.

Many of the medical and research community members who have spoken out publicly on the Yale PVS preprint chose not to focus on the study’s results, which provide important new information and findings on biological impacts that may be linked to Covid vaccination. Instead, their responses, including in a STAT opinion essay, centered on 1) the anti-vax movement’s reaction to the preprint, 2) the “bad timing” of releasing this preprint in the current political climate 3) the “poor choice of semantics” for the term PVS, and 4) other criticisms having nothing to do with the validity of the findings themselves.

Phrases like “We should all listen to patients, but …” and “Vaccine side effect research is important, but …”  were deeply disheartening for us. We should not be dismissed with a “but.” These experts were far more worried that the public might forego vaccination than they were interested in dispassionately examining whether these pharmaceutical products may indeed be dangerous for some.

Many publicly speculated that our symptoms could be caused by anxiety, depression, or a nocebo effect, despite any evidence from any study or reports that this is the case. Any anxiety or depression that we may have experienced after symptom onset is a result of our conditions, the negative impact they have on our lives, and the frustration of being dismissed instead of helped by the medical community.

Our conditions are real and are not isolated or random. Other case studies and a study done by the NIH and collaborators also support this link.

The Yale LISTEN Study research team is not indulging our illness origin theories, as some have implied. They are following the science and advancing medical knowledge. A majority of patients in the study reported similar, overlapping symptoms. The researchers examined the possibility of long Covid potentially being the cause of PVS symptoms. They tested patients’ biological specimens for anti-nucleocapsid antibodies in PVS patients to detect prior Covid infections. PVS patients both with and without evidence of prior Covid infections displayed statistically significant differences in several biological tests compared with that of control subjects.

We are not the only ones who have had to struggle against dismissal. History is full of examples of patient groups sounding the alarm and leading the charge for their conditions to be accepted. Long Covid and benzodiazepine withdrawal syndrome patients were horribly gaslit, though their symptom onsets were linked to notable events. Through patient advocacy, the conditions have gained general acceptance.

We PVS patients understand that recognizing our conditions as vaccine-related may be scary and/or inconvenient for some and that pursuing research on vaccine safety in the current highly charged environment is very challenging. We acknowledge that two of the credited authors on the preprint — numbers 13 and 14 out of 15 — are PVS patients who are connected to React19, a support and advocacy organization for people with PVS that is also involved with vaccine injury litigation. One of them is a plaintiff in a lawsuit against AstraZeneca over their vaccine. That was not initially disclosed in the preprint, but included in a subsequent version posted a week later.

Nevertheless, our conditions and the harm they have caused are serious and need investigation. We deserve a medical research community that values our well-being and dignity.

We are thankful that the Yale LISTEN Study researchers — all well-respected scientists and experts in their fields — are carrying out this important work, undeterred by the pressures from inordinate scrutiny of their initial findings even as other research in this vein has been quashed. It is critically important that this research continue and be conducted by well-qualified, respected, expert researchers.

Otherwise, this work will be ceded to those with an anti-vaccine agenda, which would be irresponsible and dangerous. We ask the medical community and scientific community to support us and help us find answers on the causes of our conditions and effective treatments and cures.

Chad Abel-Kops is a librarian in New Hampshire. Kimberly M. Harmon is a registered nurse in Massachusetts. Peg Seminario is an occupational health specialist in Maryland.

Disclaimer: These opinions are the authors’ own; they do not speak on behalf of the Yale LISTEN Study research team. They receive no funding from outside organizations and have no outside affiliation.