It is not in your head – some people develop long covid like symptoms after their shot

Investigation: Rare adverse reactions after Covid vaccinations

After the introduction of the Covid vaccinations, an international community evolved consisting of patients who developed serious, Long-Covid like complaints after their shot. Doctors and scientists are slowly seeing these injuries. “Someone has to stand up for these people.”

De Groene Amsterdammer (Dutch national weekly), february 2, 2023 / Images: Milo


Cardiologist Bernhard Schieffer had planned to take it easy during his final years leading up to his retirement. The professor and director of the university clinic in Marburg, Germany, wanted to focus less on his work. Things did not go as planned. At the end of 2021, his wife Elisabeth, who is also a cardiologist, received a Twitter message from a young woman. It is a response to her tweets about the effects of Covid-19 on the heart and blood vessels. In an email the woman shares her story: shortly after her first two Covid vaccines, she developed serious complaints that over the course of a few months turned into what can best be described as severe Long-Covid over the course of a few months. Only, she had not had a Covid infection prior to those complaints, several tests had shown that.

The Schieffers soon realize that this woman has not just googled something together. Jana Ruhrländer (32) is working on her master’s degree in biology and has studied the scientific literature extensively. She sent the Schieffers a file full of her own medical records and scientific papers, plus stories from other patients. That is why Bernhard Schieffer listened to Ruhrländer’s account a few weeks later via Zoom, a story that she shared with me a few months later.

Shortly after her first Moderna shot on July 21, 2021, Ruhrländer experienced a little more than an annoying headache. A week later she developed tingling on the left side of her body, but it doesn’t really worry her yet. That only comes when her vision suddenly deteriorates. ‘I was afraid I would have a convulsion because my father is epileptic. That didn’t happen, but I felt some kind of electrical sensations through my body.’ In the hospital, her blood pressure is abnormally high, but all other tests are normal. Maybe she has a migraine, says the doctor, who recommends ibuprofen. The next day, while folding the laundry, she felt another electric current through her body. Her doctor told her, ‘If they can’t find anything in the hospital, I can’t help you either.’

The following morning she woke up feeling as if her head is in a thick cloud. She was totally numb and shaky. When she held her hand straight ahead, it quivers enormously. She called her sister, who drove her straight to the hospital, afraid it was a stroke. A stroke was ruled out and nothing concrete comes from the neurological tests, except that she could no longer lift her legs when lying down nor could she hold up her arms. While her attending physician walked out, Ruhrländer overheard a colleague ask him what is wrong with her. ‘I have no idea.’

In the two weeks that follow, her deterioration continued. At a certain point she could barely move, she no longer recognized her own children in photos. She lay on her back with her legs up to gain some relief, the numbness only interrupted occasionally by a big shot of adrenaline that surged through her body. Her dry skin is so dry peeled off in places. Other than that, she did almost nothing but sleep, while the blood pressure and heart rate monitor continued to show erratic heartrate. A spinal tap showed a nerve infection and the nerve conduction showed in her right leg has decreased.

The doctors administered intravenous corticosteroids, anti-inflammatories. Ruhrländer recovered enormously. Once released from the hospital, she tried to recover at her mother’s place for a while, but every time she tried to walk, the dizziness and palpitations forced her to lie down again. It took two weeks before she can visitwith her husband and children. That night everything got twice as bad. Her blood pressure bounced from 180/110 to 80/60 and then back up, with wild heart rate fluctuations The following day she had not improved so her sister drove her to the ER. A doctor is available after hours of waiting. The first thing he says is, “You look like you have panic disorder.”

It took weeks for Ruhrländer to recover a little. She reported her complaints to the German governmental agency responsible for the monitoring of adverse reactions, Paul Ehrlich Institute (she will regularly add to her file). From that moment on she uses all the energy she has left to sink her teeth into the scientific literature that can teach her something about her complaints, she tells me in a Zoom conversation at the end of June. She soon sees has problems with regulation of her blood pressure and fluid balance. She discovers: the spike protein that is part of the coronavirus and that the body produces after vaccination can bind to cells that regulate these processes. Thereby it could disrupt those.The body may also produce antibodies against the proteins that normally regulate these processes. Ruhrländer suspects that an autoimmune reaction has occurred. When she shares this explanation with her doctor, he says: ‘Are you crazy? Go home.’

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Schieffer is right on target. After all, he obtained his doctorate on this system that regulates blood pressure and fluid balance and as a professor he specializes in it. He is intrigued by the possible mechanisms under long covid and these complaints after the shot. And he thinks he can do something for these patients.

During her search, Ruhrländer came into contact with fellow sufferers. Within a few months, an international network consisting of online communities, chat groups and patient organizations has been formed with patients who developed serious complaints after their corona shot. These patients offer each other support, exchange experiences and tips and draw attention to their case. All kinds of initiatives arise within the communities. For example, Ruhrländer started a newsletter and a Telegram group in which she and others share scientific articles daily. She also set up a survey to collect data on the ‘post-vaccination syndrome’ or ‘post vac’, as they call their syndrome.

I met Ruhrländer and her fellow sufferers through a fellow science journalist. That colleague wishes to remain anonymous, but this colleague hasa similar story to that of the others I spoke to in the course of 2022. Regretfully, I only took this issue seriously after the story of a colleague.

From then on it never left me. Although the vaccines have been estimated to have saved millions of lives and played a large part in reopening society, we should also keep an eye out for these kinds of stories. I realize that not every complaint that occurs after a vaccination was directly caused by it, but these stories were so convincing that they deserved a closer look. If, as the colleague suspected, these side effects are more common than ‘extremely rare’, I had to investigate this thoroughly. Even if they are super rare, this subject deserves attention. If only because of the number of boosters still to be expected and new vaccines using the same technologies.

For the time being, it seems that the group of patients with these types of complaints after the shot is relatively many times smaller than the number of patients with ‘normal’ long covid. But that does not make this group negligible. Some of these patients might have also developed these complaints after a covid infection, but some contracted the virus earlier and were not affected much, and others saw their long covid greatly aggravated after the shot. The fact that only a part of the virus seems sufficient to induce long covid-like complaints also raises the question of whether the same mechanism plays a role in both syndromes and how. A vaccination should not cause the serious complaints that it is intended to prevent.

Extreme care was required. That is why I devoted myself to this topic for more than ten months without publishing. The patients I spoke to over time feared I had been censored or had given up,. butI hadn’t, I assured them.

I understand the colleagues who did not want to touch this topic. It is extremely sensitive, complex, an evolving story: a lot has happened since I did my first interviews. Meanwhile there are still so many loose ends.

The stories I heard from more than ten patients and the dozens of other stories I read are verysimilar. Within a few days of their – sometimes first, sometimes second – vaccination, people developed complaints such as severe headaches and uncontrolled tremors, followed by nerve pain, extreme fatigue, difficulty concentrating, heart complaints and all kinds of inflammation. Some were first labeled as having an anxiety disorder, almost all of them ended up in a long process with a lot of misunderstanding and skepticism from the doctors.

If they did receive a diagnosis after endless waiting, it was often without confirmation that the shot may have played a role. For many it feels like their stories are not allowed , because of external interests more powerful than their own. They are regularly dismissed as anti-vax by people around them, while they obediently took their shot(s), some even participated in clinical trials set up to show the effectiveness and safety of the vaccines.

It is striking how some of these patients try to stay away from the classic vaccination critics or ‘anti-vaxxers’. Although some individuals and groups within the international network are (after months of trying to raise awareness) barely distinguishable from them, the main goal of this patient community is better research into the side effects of these shots and who is at risk, preferably performing research to reduce the risk of adverse reactions. More than that, they want two things: help and recognition.

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That recognition seems to be slowly coming into view. Although authorities such as the European Medicines Agency (EMA) and the US Food and Drug Administration (FDA) have not yet confirmed the existence of these side effects and their link to the vaccines, the number of articles in the medical literature about patients with ‘neurological’ or ‘long covid-like’ complaints after the shot is growing steadily and some leading scientists are calling for more research into the post-vaccination syndrome.

In Germany, the media have been reporting on these complaints since last spring. In the Netherlands, C-support, set up by the national government to support long covid patients, first reported long-term complaints after the vaccination beginning December 2022 and the Dutch adverse reactions monitoring institute Lareb is conducting further research together with that organization. More than four hundred patients have reported to C-support in a year’s time, can be read on its website: ‘It is difficult to prove there is a connection with vaccination. (…) More scientific research is needed.’

The questions that arise are: how many are injured and how diverse are their complaints and their severity? If these complaints are indeed so serious and can be linked to the vaccination, how is it possible that the authorities do not officially confirm them? Is it really that complicated or is there also unwillingness? If vaccine safety monitoring systems fail to pick up on this signal, what does that say about their reliability? In a time of polarization and misinformation, is there enough attention to the possibility that these vaccinations had a devastating effect on part of the population?

IT is not news that vaccines side effects don’t just include the well-known stiff arm and fever but can occasionally trigger more serious symptoms. Vaccine safety expert Robert Chen of the Brighton Collaboration, a global vaccine safety research network, explains it using a bell-shaped curve that represents a “normal distribution.” “The vast majority of people are around the middle of the curve and respond well to a vaccine. No serious side effects, sufficient antibodies and thus protection against the pathogen. But at the two extremes of the curve are the people who either produce too few antibodies or whose immune system overreacts in some way.’

For a long time, many vaccine experts regarded those harmed as practically irrelevant – after all, they involved assumed numbers of around one in a million to one in a hundred thousand, and vaccination is about protecting as much of the population as possible. A lot of attention to side effects could deter people from taking that shot, causing more harm. According to Chen, that attitude is no longer tenable.

Little attention to serious side effects leads to denial, which can result in an underestimation or even ignoring problems that do exist. It is irresponsible to neglect people with suspected side effects when governments strongly recommend or require a vaccine. Moreover, because fellow sufferers find each other via the internet. Sooner or later the stories will come out, their complaints and how doctors and authorities respond to them. “The goal of vaccination programs, in addition to eradicating disease, should also be to try to eradicate the side effects of those vaccines,” says Chen.

Since the introduction of the covid vaccines, the existence of these serious side effects has also reached the public. It soon becomes apparent that the vaccinations can trigger a strong hypersensitivity reaction shortly after administration, which in rare cases leads to a life-threatening anaphylactic shock. Fortunately, this issue is treatable: there was a waiting period of 15 minutes after the injection and a waiting period of half an hour for people with an increased risk.

Two months after starting the vaccine campaign,reports came from various European countries about young women developing severe thrombosis in combination with extremely low platelet counts a few days after their AstraZeneca vaccine. This results in strokes and pulmonary embolisms were fatal in several women. At first, some thrombosis experts dismissed the reports, but the governments interveneed shortly afterwards: in the Netherlands, among others, a ‘vaccine clinic’ for non-seniors was announced and most countries decided to use this vector vaccine (based on a slightly different technology than the mRNA vaccines) from then on in senior citizens only. In the Netherlands, one person officially died from this side effect. Since November 1, 2021, this vaccine is no longer used in the Netherlands.

Because the world has decided not to believe us, this is triggering a whole dynamic of people exchanging protocols

As disturbing as these reports are, they also tell a different story: medicine watchdog European Medicines Agency was on top of it, cases like this come up quickly and rapid action follows.

Yet in those two years there were also signals with which the authorities had more difficulty. For example, during the first vaccination round in early 2021, a striking number of frail elderly people seem to died suddenly shortly after their vaccination. Is it a coincidence? Or has the shot given them a final push?

The authorities in Norway were considering the second possibility. They had a team of elderly care specialists analyze the data of the first hundred frail elderly people who died shortly after the injection. In May 2021, those specialists concluded that a causal relationship is very likely in ten percent of the cases they investigated and plausible in a quarter. The Dutch Lareb also drew a similar conclusion: ‘In 22 of the 662 reported deaths shortly after vaccination, known common side effects of the vaccines, such as fever, may have contributed to the deterioration of an already vulnerable health situation.’

And is it indeed true that the Covid vaccines mess up the menstrual cycle of some women? In mid-2022, the EMA experts concluded that no causal relationship has been proven. An irregular cycle is quite common and perhaps the number of reports is so high because women have heard or read about it – a media effect. In response to this reasoning, a researcher working on the issue remarks in the American journal Science: ‘Our starting point is to believe the people we talk to and then base our studies on that.’

Lareb (what is “lareb”?) director Agnes Kant is committed to taking these complaints seriously, even in the absence of hard data. ‘When symptoms are common, it remains unclear for longer whether they can be caused by the vaccination. That just makes it difficult,” she said. At the end of October 2022, the EMA concluded that there is sufficient evidence for the link between the mRNA vaccines and a temporary disturbance such as increased blood loss. According to the EMA, there is no evidence that this affects fertility (unless you consider a staggered cycle as an extra hurdle in getting pregnant). Whether there is more going on in smaller groups remains to be seen.

Finally, there is the issue of ‘myocarditis’, the inflammation of the heart muscle that occurs in a small percentage (a few cases per hundred thousand vaccinees), especially men under the age of forty, after the second or subsequent mRNA corona shot – in this group according to some studies in a higher proportion than after a corona infection. In particular, it is still unclear how serious the possible long-term effects of this heart inflammation can be. The inflammation might in some cases leave scar tissue on the heart muscle, which can increase the risk of heart problems. This complicates the assessment of benefits versus risks in healthy young adults.

Are side effects more common after Covid vaccines than after other vaccines? In any case, it is clear that the covid vaccines are generally ‘spicy’: the immune system reacts quite fiercely to them, so that they cause complaints such as fever, headache and general malaise in a significant part of the recipients in the days after the shot. ‘Those are really more common than with the flu shot, for example,’ says Kant. There also seems to be a risk of shingles more often than with other vaccines, due to reactivation of the chickenpox virus that has been dormant in the body. These shots clearly put the immune system to work.

A possible explanation for this is that the Covid vaccines contain a relatively high dose. Not surprising: it would have been disastrous if that dosage had turned out to be too low during the approval phase. Furthermore, it is now known that the harmless adenovirus (a cold virus that functions as vector to introduce the genetic code of the spike protein into the cells) contained in Janssen and AstraZeneca generates a considerable reaction, and that of Pfizer and Moderna, the lipid nanoparticles in which the mRNA is packaged appear to be quite reactive.

In their defense, experts often argue that a strong reaction from the body is a sign that the vaccine is working. But that reasoning is not entirely correct: the symptoms are indeed a sign that the immune system is activated, but there are also vaccines that are very mild and at the same time elicit a very good immune response.

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The question is: does such a higher percentage of mild to moderate side effects translate into a higher percentage of (more) serious side effects? Lareb (what is “lareb”?) director Kant, trained as an epidemiologist, finds it difficult to say. ‘Serious side effects often have a specific mechanism of action. Does that also depend on the extent to which the immune system reacts to the shot? That will not be the case with all side effects.’

In addition, the comparison with other vaccines is also complicated, because most vaccines are administered to children. An adult body reacts differently. Take autoimmune diseases, for example, which occur more often in women between the ages of thirty and fifty and much less in children.

A decisive factor in the monitoring of potential side effects is how often a certain disease occurs without a vaccine being administered. After all, when people get certain symptoms after a vaccination, that can also be a coincidence. Before the introduction of the covid vaccines, European researchers mapped those ‘background figures’ for 41 ailments that they suspected could emerge after the vaccinations, including the temporary facial ´Bell’s’ palsy and the nerve disorder Guillain-Barré Syndrome (GBS). Since then, they have compared those figures with the actual ones.

The monitoring is headed by Miriam Sturkenboom, professor of pharmacoepidemiology at UMC Utrecht. “The system is very good at picking up strong signals that stand out sharply against this background,” she says. ‘It helps if the symptoms are clear and unambiguous and if they normally occur rarely in the group in question, such as thrombosis with low blood platelets in young women. Conversely, if the symptoms are already common or vary widely, the system functions less well.’

An example of such a less clear signal because the complaints are quite common is tinnitus, hearing an unpleasant beep or noise. This is reported in rare cases after a Covid vaccination. American vaccine researcher Gregory Poland, among others, suffered from it after his covid shot. It is now included in the package leaflet with the Janssen vaccine, the other corona vaccines may follow later.

And then there are various, difficult to define and diagnose complaints such as chronic fatigue, as with Jana Ruhrländer. What also does not help is that Covid itself causes similar complaints. In the spring of 2022, Lareb (what is lareb) lets me know that it sees no signal (as of yet) that could indicate a link between the vaccination and these complaints (in early 2023 it still doesn’t).

These types of long-term complaints are complicated by the fact that the system is not set up for them, says Ruhrländer. ‘In principle, you report individual symptoms and it is also complicated to indicate whether, for example, you had a headache for a few days or whether it was extreme and lasted for months. Over time, we have advised each other within our patient group to keep adding information to our files.’

Insofar as the symptoms reported by these patients can be grouped under one heading, it is ‘dysautonomia’ or autonomic dysfunction, the disruption of all kinds of automatic processes in the body such as blood pressure and heart rate, the nervous system and the immune system. One of its most frequently cited manifestations is POTS: postural orthostatic tachycardia syndrome. This manifests itself in extreme palpitations and blood pressure fluctuations when standing, resulting in extreme dizziness, headaches and fatigue. Nerve pain, numbness or tingling often also occur because the small nerve fibers in the skin are affected.

For a long time, science paid little attention to these kinds of complaints. They were too difficult to diagnose and occurred mainly in women, sadly reinforcing the tendency to jump to conclusions like “it’s all in your head.” Partly due to Long Covid, this is starting to change, says Lauren Stiles, who herself developed dysautonomia-related complaints after a combination of a concussion and a viral infection more than ten years ago. She founded the Dysautonomia International foundation in 2012. Doctors don’t learn about these kinds of complaints and they have a hard time diagnosing them, she says. There are strong suspicions that the deep nuclei (basal ganglia) in the brain are dysregulated, the control centers for the autonomic nervous system in the brain. ‘And it is precisely these that scientists can hardly visualize with brain scans,’ says Stiles. ‘The first study in which this happened appeared in 2019.

As long as the complaints remain in the corner of ‘medically unexplained’, there is a vicious circle: doctors do not make the diagnosis or come to different conclusions, and as a result the authorities do not pick up clear signals. As a result, many doctors will reject the complaints and the link with the shot.

“It’s been a struggle to get medical reports stating: this is what happened to you,” says Belgian Julie Bertone, who was a lecturer at the Vrije Universiteit Brussel before she came home with complaints. “Physicians have also often been afraid to draw this conclusion or even treat patients like us because their colleagues will think they are conspiracy theorists.”

The lack of scientific recognition also affects patients on social media. Posts are regularly flagged or removed by moderators of the platforms, or patient groups are shut down completely. Patients are forced to avoid terms such as ’vaccine injury’ and to use coded language to exchange their experiences. The same dynamic occurs in the media. While alternative websites are full of poorly substantiated claims about vaccine damage, the mainstream media is so reticent that they hardly pick up on these stories.


American Brianne Dressen also noticed how controversial the complaints after the shot are. She is a mother of two children and until her vaccination she was a teacher at a preschool that she founded herself. At the end of 2020, she participated in the AstraZeneca clinical trial, after which she developed severe neurological complaints that would later turn into a serious Long-Covid-like disruption of her body.

For the first seven months she did not go public with her story. Her husband Brian, a chemist, knows his way around the scientific community, so she reported to all agencies: FDA, NIH (National Institutes of Health), CDC (Centers for Disease Control and Prevention), the manufacturer. They were not very open to her story. She approached authoritative media that she likes to read, including The New York Times and The Washington Post. But articles did not emerge.

In the meantime, she set up a peer support group:, which would become the hub of the international patient community. Over time, she found herself faced with a dilemma: there are people who are open to their message, but whom she prefers to stay away from: politicians and activists who are also known as ‘antivax’.

‘You have to be very, very careful about what you do and don’t say, because of possible adverse effects on public health’

From the start, Dressen tried to stay as close as possible to the scientific mainstream. Otherwise they would make it far too easy to dismiss them as spreaders of misinformation. She also has no political agenda, she said. ‘But if you’ve already tried it everywhere and certain parties then say: ‘We believe you, we’re going to help you’, then it’s… complicated.’

In June 2021, Dressen and fellow sufferers affiliated with React19 came into contact with Republican Senator Ron Johnson, who is known to be very vaccine-critical. They decided to participate in a private meeting, but dropped out when it turns out to be a Covid denial meeting. They kept in touch through their smartphones. If things go awry, they would text the word ‘ivermectin’ – the antiparasitic drug that many covid skeptics took instead of a vaccine. “That was our inside joke,” says Dressen.

Before Johnson spoke, a doctor goes wild about the fact that you – according to him – can only contract Covid once and that the vaccines are poison. Until Senator Johnson cut it off and said, “We’re here to hear their stories.”

“Before that point,” says Dressen, “no one of influence had bothered to listen to us.” Johnson took notes and continued to shake his head. At the end he said, “I had no idea it was this bad.” He stayed an extra hour and a half to hear all the stories. He organized a press conference, on their own terms. “So nothing about ivermectin or Covid, nothing about these vaccines killing everyone,” says Dressen. We just wanted to share our experiences, and he respected that.’

At that point she still thought: we just have to get our story in the news and then we will get help. But the mainstream media reported very differently about the press conference: CNN, among others, describes it as ‘a misinformation panel of the infamous anti-vaxxer senator Johnson’. Their faces were not shown, their stories were not discussed.

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These kinds of incidents make the patients suspicious. In the Netherlands too. When I approached the patients who have united under Covid Vaccine Injury Support Point in the summer of 2022, I am not able to speak to anyone despite several requests. ‘We deliberately do not seek journalism. (…) From our point of view, we find your news reports too one-sided. We do wish you every success in your research.’

On the CVI site I found the story of a woman I approached via Facebook. She responds within days. After an introduction by telephone, we agreed that I will visit her, but attempts to do so repeatedly failed. When I tried again, she said: ‘Based on our telephone conversation, I have the impression that it will be a very careful story. I don’t want to participate in such an article.’

More than two weeks after our last app contact, the woman went on the air at the alt-right public broadcasting station Unheard of the Netherlands, next to immunologist Carla Peeters who advocates withdrawing the vaccines.

The woman sent me the details of another patient who would speak to me, Iris de Boer. At her home in September 2022, she talked about her illness, which is very similar to that of Brianne Dressen and Jana Ruhrländer, and also about the attempts to convince the Dutch institutions such as the rivm, the GGD and Lareb,(not sure what the English translation is for these) among others, that there is a group of patients with serious long-term complaints caused by the injection. ‘I’m not necessarily saying that the vaccination is bad. I just think you should find out who it can be bad for. But that is not being done.’

De Boer has also told her story to various mainstream media. ‘In the end it was apparently too controversial after all.’ Inspection of several emails revealed that various journalists did indeed back down, in several cases because they came to the conclusion that an investigative journalist is needed for this. Just before I left, De Boer told me that a special edition about vaccine injuries will be published that week in De Andere Krant – an alternative weekly magazine founded in 2018 that is characterized as a spreader of conspiracy theories – containing the stories of her and a number of other patients.

Ruhrländer can imagine it so well: that after a while for some people it doesn’t really matter where their story appears, as long as they are heard. On the other hand, she fears that these kinds of publications will backfire. Harriet Carroll, a patient from Great Britain shares this view. There, fellow sufferers have united within the UK CV Family. Some members of the group have appeared in documentaries with a strong anti-vaccine message, such as Safe and Effective: A Second Opinion, which appeared in October and has since been censored on YouTube.

The documentary also features cardiologist Aseem Malhotra. After his father died of a heart attack six months after the shot, he has emerged as one of the fiercest anti-mRNA vaccine activists. In doing so, he joined the ranks of former mRNA researcher Robert Malone and Belgian virologist Geert Vanden Bossche, among others. They are at the forefront of a small but vocal scientific opposition which argues that the harms of these vaccines outweigh the benefits. They also question the many studies that show that the vaccines still significantly reduce the risk of severe Covid and mortality.

React19’s Twitter account regularly shares messages from scientists such as Peter McCullough who are fiercely opposed to (Covid) vaccinations. Brianne Dressen: ‘When our social media manager sees something relevant that (according to him – ed.) is correct, he shares it. As long as the appropriate sources remain silent about this, we have a limited group of professionals to draw from.’

According to Harriet Carroll, the alternative media and experts are usually not out to help patients or find solutions, but to advance their own agenda – mostly anti-government and anti-pharmaceutical industry. ‘They do not care about us. I’ve noticed that with several patients I know.’ On the other hand, she says: ‘At least those alternative media believe the patients. That’s what you should start with, to do research from there.’

The fact that patients often receive no response from mainstream media is, according to Carroll, a consequence of the norm that science and politics have created. “Then as soon as people turn to the alternative media, those scientists and politicians say, ‘See, they’re anti-vax.'”

During the pandemic, Carroll was not only involved in research into the effectiveness of a Covid vaccine, but also in dispelling doubts about the vaccines online. Until she developed complications herself. ‘There is a lot of misinformation about alleged harmful effects of vaccines,’ she says. ‘But I now see that some arguments in favor of vaccines are also based on fallacies.’

As an example, she mentions that vaccine side effects would in principle not occur in the long term. This is related to the assumption that a causal relationship can only be demonstrated if the complaints can be identified and diagnosed shortly after the injection – an example of circular reasoning. ‘My shortness of breath, for example, only started seven months after the jab. But when you understand the underlying mechanism, namely the slow formation of microscopic blood clots that clog the capillaries leading to your lungs, you understand that it may be related.’

Carroll had never heard of autoimmune reactions after vaccinations before she was confronted with it herself. ‘A lot has been published about this in the scientific literature, but it always remains with loose series of cases and then the reasoning is: the causality cannot be proven,’ says Carroll. ‘While this may well be the case in specific groups.’

Patients such as Carroll, Ruhrländer and Dressen realize that they cannot break out of this vicious circle as long as there is no convincing scientific evidence linking their complaints and the vaccines. Their hopes are pinned on doctors and scientists who are open to this. Like cardiologist Bernhard Schieffer.


Schieffer promised Ruhrländer a commitment to the cause during their first digital meeting. A few weeks later he emails her: ‘We started the clinic. You can come and send other patients.’

Schieffer also does something else: he spoke out in the media to draw attention to patients and their complaints. This group is relatively small, Schieffer emphasized in a broadcast by the German public tv channel ZDF in June 2022. He preferred to stay away from the numbers discussion, because hard numbers are lacking, but based on general figures from the German authorities, he assumed that serious side effects occur in about 0.02 percent of vaccinees. That is relatively few and the severity also varies considerably, but in Germany alone it would still be 25,000 to 30,000 people, in the Netherlands several thousand (for comparison: in Germany alone there are an estimated 250,000 ‘ordinary’ long covid patients, according to Schieffer).

He also came into contact with the Paul-Ehrlich-Institut (pei), the German vaccine institute that also monitors adverse events. ‘They helped us map out our patients, we supplied them our data. Before we did, they had received about 150 reports, but some were so strange that they couldn’t make any sense of it,’ says Schieffer.

In this way, Schieffer contributed to the fact that the mainstream media in Germany started reporting in mid-2022 on the allegedly rare, serious side effects of the covid vaccines. The waiting list at the outpatient clinic in Marburg is growing to thousands of patients from Germany and abroad.

On Tuesday afternoon, August 30, 2022, Anita Schüßler walked into Professor Schieffer’s consulting room, delighted. After almost six months of waiting, it is the 46-year-old woman from Runkel’s turn and she gave me permission to be there. Since early this morning, she has had tubes of blood drawn, undergone an exercise test and completed an enormous questionnaire. A friend had sent her a newspaper article in which Schieffer talked about the complaints of his patients. “It was exactly my story,” she told me before the consultation.

If the complaints are indeed so serious and can be linked to the vaccination, how is it that the authorities do not confirm them?

Schieffer discussed the results of the investigations with Schüßler. She has elevated inflammatory markers, which are also common in Long Covid patients. Three months ago, after her vaccine reaction, she contracted Covid. This could be seen in her sky-high antibodies – they were even too high, according to Professor Schieffer, a possible sign of an overreaction. She had elevated cholesterol, probably because its regulation is disturbed, and POTS, dysregulated heart rate and blood pressure. “That’s what scares me the most,” says Schüßler. “I even went to the emergency room once because I was afraid I was having a heart attack.”

‘Fortunately, we can treat those complaints,’ says Schieffer. “And the inflammation is probably amplified by the autoimmune thyroid disease that your doctor diagnosed last month. It could be that it was exacerbated or triggered by the shot, it’s hard to say.’

Together with his wife, cardiologist Elisabeth Schieffer, in September 2022 Schieffer published their hypothesis of what seemed to be going on with long covid and post vac. First of all, they suspect that the spike protein disrupts all kinds of processes. The spike protein is the part on the virus envelope that allows the virus to attach itself to the human cell in order to insert its genetic material. It does this via receptors that play an important role in regulating all kinds of processes in the body, such as fluid balance and heart rate. The spike protein can remain in the body for several weeks or longer and reach different places in the body. ‘We see the disruption of the menstrual cycle, for example, as an indicator of a broader disruption of body processes,’ says Schieffer, ‘because the hormone cycle is also related to this.’

The disruption might also happen indirectly, researchers such as Schieffer suspect. The spike protein shows similarities with proteins that regulate these processes in our own body. This acts as a kind of disguise for the virus, since the immune system basically only attacks what is foreign to the body. If the immune system does produce antibodies against these pieces of the spike protein, they can also target the corresponding body proteins and thus disrupt their functioning – an autoimmune reaction.

Researchers suspect that women’s immune systems see through these kinds of disguises more often than men’s, but as a result also more often produce antibodies against their own body, so that they develop autoimmune diseases and probably also more often long covid and these types of complaints after the shot.

Finally, Schieffer and his colleagues have discovered that in many patients with long covid and patients with post vac, other viruses that have hidden in the body reactivate. They probably seize their chance because this virus and this vaccine demand quite a lot from the immune system. Jana Ruhrländer, for example, had a flare-up of a Borrelia infection (Lyme) that she was unaware of and her immune system was struggling with and reactivated herpes. Another example is the Epstein-Barr virus (EBV), which is known to cause mononucleosis and also increases the risk of multiple sclerosis . EBV contains many proteins that resemble proteins in our nervous system, so that antibodies directed against the virus also cause damage in the body.

In their article, the Schieffers suggest that knowledge about post vac can provide insights into the mechanism of long covid, partly because it has such a clear starting point. Other than that, Schieffer sees little difference at the moment. The doctor speaks reassuring words to Schüßler: ‘We see three categories of patients. We can’t do anything yet for the first ones, they are completely disrupted. A second group recovers reasonably well, but remains stuck in a vicious cycle of inflammation. There we have to look for underlying causes such as other infections and autoimmune diseases. You belong to the third, I expect that within a few months you will be more or less your old self again.’

Despite this, Schüßler leaves somewhat unsatisfied. In addition to the advice to have her thyroid condition treated, she also receives a prescription for a cholesterol inhibitor and a blood pressure reducer (a statin). Schieffer acknowledges that the treatment is mainly aimed at symptoms, although the blood pressure lowering can actually prevent the spike protein from disrupting blood pressure regulation. ‘We treat the patients broadly the same, and in a few months we hope to know how differently they respond.’

I did not travel to Marburg alone. In Kassel, a little later , I picked up Jana Ruhrländer. She has visited the clinic several times since that first conversation with Schieffer. Her situation has improved considerably through the treatment of her Lyme and medication that Schieffer and her other doctors have prescribed for the heart and circulation problems, but mainly because of the neurological complaints, she is still far from her former self.

When we walk into the hospital in the morning I have to be careful not to go too fast. Ruhrländer shuffles, even though she says she’s having a good day. In the department where the diagnostics take place, long covid and post vac patients are helped along with the normal cardiology patients. The only thing that stands out are the ‘post vac’ notes on some of the doors – no sugar coating, just clinical reality. In the waiting room, Ruhrländer shows me the thick folder containing her file: scientific articles, medical data, rejections from her health insurer for reimbursement for experimental treatments.

Ruhrländer discusses her situation with a doctor. She is currently taking antihistamines (a hay fever medicine) and so-called mast cell stabilizers, which reduce the activity of immune system cells that appear to be overactive. The doctor suggests adding an anti-itch remedy because her skin is still bothering her.

Scientists are not only investigating the complaints after the injection in Marburg. Early in 2022, colleagues from Science published a story in which they listed several scientists who had become involved with the issue. For example, the prominent professor of immunology Akiko Iwasaki at Yale University studies the disease mechanisms and effects of treatments in long covid and post vac patients. Because Harriet Carroll was not only a patient but also a scientist, she – after not being taken seriously for ten months – wrote a scientific article with colleagues about her health after the AstraZeneca vaccination. At first the cause seemed to be a deficiency of vitamin B12 caused by the jab. Unfortunately, she says, she is working on an update. Follow-up tests showed that she had very small pulmonary emboli, as a result of the blood clots. It also turned out that, just like Ruhrländer’s, her mast cells, which play a role in inflammatory reactions, are overactive. In addition, the stress hormone cortisol has been greatly reduced in her, just like many long covid patients from Iwasaki’s study.

Carroll still only works part-time as a researcher, almost all of her energy outside of that is devoted to long covid and post vac, including in collaboration with Team Clots, the research team that studies the microscopic blood clots. ‘I feel privileged to have so many benevolent people in my scientific circle, even though I notice that the bar for evidence is higher than usual. There is still a lot of resistance.’

Brianne Dressen in the US experienced this resistance up close. Through her husband, she came into contact with neuro-immunologist Avindra Nath at the National Institutes of Health (NIH). He set up a study in early-2021 in which his team examined Dressen and more than twenty-two other patients and concluded they had neuropathic symptoms. They received an infusion of purified antibodies to bring their overactive immune system back into balance. Some of the patients temporarily improved.

After that, however, it remained silent for months. In May 2022 article appeared online in which they stated that ‘a variety of neuropathic symptoms may manifest after SARS-CoV-2 vaccinations and in some patients might be an immune-mediated process’. Normally, such a piece is later published, possibly adapted, in a scientific journal, but that has not yet happened. Something else is strange too: the article does not contain the data of all examined and treated patients and it says that they all recovered. When they tried to make it clear that each and every one of them had relapsed, Nath didn’t budge.

Nath turned down several interview requests from me (I did speak to him earlier during the pandemic) and only responded to some emailed questions after repeated reminders. ‘We can only determine whether there is a causal relationship with large epidemiological studies or experimental lab or animal studies,’ he writes.

One of his fellow researchers, professor of neurology Anne Louise Oaklander of Harvard Medical School, does agrees to talk. ‘We started this study quite naively, and then it was dragged into politics.’ What does not help is that it is a small, limited retrospective study, without a control group. ‘Such results quickly take on a life of their own,’ says Oaklander: “On the one hand, you have to stay true to the facts. On the other hand, you have a loyalty to the patients. But you have to be very, very careful about what you say and what you don’t say, because of possible adverse effects on public health.’

At the same time, Oaklander wonders whether the long-term problems reported after covid and after the corona vaccines are so unique. ‘We also see it after other vaccinations and also after infections. The immune system reacts and in some people there is an overreaction.’

An immunologist who has been studying such overreactions for years is Israeli professor Yehuda Shoenfeld, who, at almost 75 years old, still works at Sheba Medical Center. He described the phenomenon with the HPV vaccine (as well as with others). ‘There is a collection of complaints that have been labeled in the head’ such as chronic fatigue syndrome and myalgic encephalomyelitis (ME), pain complaints that are called fibromyalgia, POTs (disordered heart rate and blood pressure) and paresthesia which is a disorder of the sensory nerves’, says Shoenfeld. ‘They all have to do with a disruption of autonomic systems in the body, in response to an outside stimulus such as an infection or vaccination, in combination with genetic predisposition. I don’t think it’s surprising that these also occur after covid and the covid vaccines.’

According to Shoenfeld, there is hope for these patients, because he believes we are at the beginning of a revolution: scientists are beginning to unravel how these complaints arise and can diagnose them by measuring autoantibodies . ‘More than twenty autoantibodies have now been identified that target receptors of the autonomic nervous system.’

Researchers such as Shoenfeld prefer not to talk about autoantibodies, but about regulatory autoantibodies . In the healthy situation, they argue, they are also there, but in the right amount – they fine-tune all kinds of body processes. In patients with long covid and post-vaccination syndrome, there are not yet fully understood reactions from some autoantibodies that are too much and from others too little, says Shoenfeld, causing all kinds of body processes to go out of control.

The number of companies offering autoantibody tests has grown sharply since the covid crisis. One of the best known is the German CellTrend, which collaborates in research with Shoenfeld and offers tests for chronic fatigue syndrome, long covid and post-vaccination syndrome, among others. Patients from Germany and abroad send blood samples, says Harald Heidecke of the company. “Almost all of them test positive for various autoantibodies.”

There is also criticism: the technology is promising, but these companies are going very fast. According to university experts, the autoantibodies they test for are still insufficiently substantiated. In other words, all kinds of things come out of the tests, but what that means exactly is unclear, says neurologist Harald Prüß, who also conducts research at the Charité university hospital in Berlin into these types of biomarkers for long covid and post vac. “Many of my patients did their testing at CellTrend at their own expense. Then they want advice from us, and that’s hard to give. And if you send a sample to different companies, you will get different results.’

Shoenfeld ’s work is also controversial in a broader sense. For example, he gave lectures at conferences that colleagues regard as antivax and they accuse him of acting as a witness during court cases in which patients tried to obtain compensation for their alleged vaccine injuries. “Manufacturers and others use this to discredit me,” Shoenfeld sighs. ‘They are afraid that people no longer want to be vaccinated.’

Based on our telephone conversation, I have the impression that this is going to be a very careful story. I don’t want to participate in such an article

Vaccine experts point out that the link between vaccines and autoimmune diseases suggested by Shoenfeld has never been conclusively proven and find the syndrome he describes far too vague. Even autoimmune diseases that occur years later could still be triggered by the vaccine based on Shoenfeld’s theory. “According to Shoenfeld, everything is autoimmune until proven otherwise,” said Paul-Henri Lambert, a vaccinologist and former chair of the WHO’s vaccine safety advisory committee. ‘If you say that, you are really pushing the boundaries of science.’


The fact that the link with these autoimmune syndromes has not been proven may also be due to the fact that they are so difficult to diagnose and define. At least that’s the belief of vaccine safety expert Rebecca Chandler. She was working at the Swedish Vaccine Safety Authority when reports surfaced of teenage girls who had developed POTS after their HPV vaccination. The link to the vaccine has never been confirmed by authorities.

Chandler fought for years to recognize and better define these rare, serious complaints. She also wrote an article in the British Medical Journal about the shortcomings of adverse event monitoring. For example, the experts at the adverse event monitoring centers oversimplify the reported symptoms, which means that a lot of information is lost, she says. ‘We need to look much more at the big picture.’

Chandler is hopeful that in the wake of long covid, the rare complaints after the covid vaccination such as dizziness and palpitations due to POTS and subsequently those after the HPV shot will receive recognition.

Researchers who have been studying these syndromes for years seem to be slowly gaining a foothold. A recent publication in Nature Cardiovascular Research confirms the link between the covid shot and POTS. The researchers compared the risk of the diagnosis in 300,000 vaccinees during the 90 days before and after the injection. That risk turned out to be about a third higher after the shot. The researchers mention that the risk of POTS after a covid infection is about five times higher. But they also emphasize that more understanding of these kinds of vaccine adverse reactions is needed to maintain confidence in vaccines. “I did shed a tear when I read this article,” says Chandler. She sees it as a major breakthrough towards recognition of POTS as a possible vaccine adverse reaction, putting it on the list of conditions to watch. ‘We can investigate why these patients in particular got POTS.’

For example, the long-term complaints after the injection are slowly shifting towards the established media and medical science. With Germany in the lead. The Minister of Health Karl Lauterbach already mentioned it on Twitter in June 2022 . The Paul-Ehrlich-Institut(pei), the German vaccination authority, lists the reports of post vac in a report in September 2022, although it does not yet label them as a signal that there may be an adverse reaction. The institute reports more than 450 reported cases, although ‘important clinical information is often missing, so that diagnostic certainty can often not be assessed.’

According to the PEI, the relatively high number of German reports may be the result of all the media attention. Or is the opposite happening? Is there under-reporting in other countries due to unfamiliarity with the complaints and the possible link with the shots among patients, doctors and authorities?

Due to the overwhelming amount of over 200.000 adverse event reports filed by patients and doctors since the introduction of the covid vaccines, the Dutch experts at Lareb had to fall back on pattern analysis instead of individual assessment of each report. Moreover, the emphasis was initially on signals that were relevant to the entire vaccination campaign, although particularly specificsituations were certainly looked at. Only recently has there been room for analyses in which they look for complaints that may be related to each other. No signal has yet emerged from this that resembles what these patients describe, says Lareb director Agnes Kant. ‘It remains very difficult. It’s just a collection.’

Kant adds that together with C-support, founded to support long covid patients, they monitor the long-term complaints after the vaccines. NPO Radio 1 first reported long-term complaints after the covid vaccination at the beginning of December 2022, after C-support had published that more than four hundred patients had reported suspected post-vaccination complaints (there are now more than 500). The Lareb mentions 35 reports, the majority of which are an exacerbation after the injection of already present long covid. In addition, there are also 31 reports in which the existing long covid complaints have improved after vaccination.

Until recently, other research, in which the health complaints within the group of vaccinated people are compared with those in the same period among non-vaccinated people, was impossible in the Netherlands until recently: for reasons of privacy, scientists were not allowed to simply link such data files, even if they were anonymized, explains Kant. ‘It is just so frustrating that we in the Netherlands seem to be more concerned about the fact that even though the medical data cannot be made public, people fear that something is being done with their data, rather than the need for answers about this kind of issues.’

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Meanwhile, the patients themselves also try to contribute to the knowledge. The Belgian Julie Bertone, who recently returned to being a part-time lecturer-researcher at the University of Brussels, started to draw up questionnaires for the members of her community in order to collect data about their symptoms, their experiences with doctors and the (self-)medication they have taken with more and less success. ‘I’m quite critical of that myself, but it’s good to map it out as precisely as possible.’

Most patients I spoke to are convinced that there are more serious covid vaccine side effects than the current numbers tell, although there is undoubtedly also a distorted picture because they are part of a community of fellow sufferers. Nevertheless, it cannot be ruled out that part of the side effects remain undetected, partly because doctors are not always convinced that there could be a link and therefore do not report it, and not all patients make the link between their complaints and the vaccination. In any case, it is clear that the figures that are available paint an incomplete picture. This is another reason why better monitoring and research is so important.

It is of great importance to ensure that doctors worldwide report complaints in the same way, which increases the chance that the medicine watchdogs can observe an unequivocal signal. This requires definitions for, for example, POTS and post-vaccination syndrome. Experts are discussing this at the highest level, under the banner of the Brighton Collaboration, the worldwide non-profit vaccine safety research network. However, such processes are so slow that it will take months before that definition will be there, says director Robert Chen by e-mail.


After a year of research, it is in any case clear to me: I cannot yet close this file. The last word has not yet been said about the serious side effects of these vaccines, which are still probably rare. Also considering the booster campaigns. If anything has stuck, it’s the despair and alienation of the patients. Just like with others when something intense happens, they deal with it in different ways.

I have gained more understanding for the people who have become fiercely against vaccines after what happened to them. Their outlook has changed forever and they have completely lost faith in the system. They fulfilled their civic duty, feel abandoned and look for support in each other that they do not find in others. We also need to keep an eye on that group.

Unfortunately, the help that the patients receive from benevolent doctors is also not the cure-all. Anita Schüßler, the patient whose consultation I attended with Professor Schieffer, informs me a few months later that the medication she was prescribed had not helped her. She heard from several patients that they felt somewhat like a number at the clinic, just like she did. “Professor Schieffer has so many patients that he can’t possibly give everyone his full attention.”

So many patients turn to alternative medicine. Almost all the patients I spoke to had a whole collection of medicines and supplements. For example, many patients take (unproven) drugs such as ivermectin, antihistamines, mast cell stabilizers and anticoagulants – the latter to dissolve the microclots that seem to clog the smallest capillaries of the vascular system.

There are many clandestine protocols circulating, says Julie Bertone, and there are names of doctors who do listen to patients seriously. Among them are doctors who offer unproven or even controversial therapies, she says. ‘Because the world has decided not to believe us, this is creating a whole dynamic of people left to their own devices and exchanging protocols, which is very dangerous.’

In addition, there are also experimental treatments that do have a serious chance. For example, there is immune adsorption: the specific filtering of antibodies, including autoantibodies, from the blood. That therapy is not only very expensive and at patients own expense, it has not yet been proven that the autoantibodies are indeed the cause of the complaints and whether filtering them out reduces the complaints – a research group at the Charité in Berlin is trying to find that out.

In addition, the autoantibodies usually return within a few weeks to months because the immune cells that produce them are still there.

The hope that Jana Ruhrländer had pinned on immune adsorption turned out to be in vain. Her treatment had to be interrupted because she contracted an infection. Last fall she traveled to a clinic for an unproven treatment in which she was given 100 percent oxygen through a mask, which also made no difference.

Ruhrländer felt heard by Schieffer, but now knows: one doctor who takes you seriously is not enough. This problem is too complicated, more doctors and bigger budgets are needed. Still, she tries to convince her fellow sufferers that they should trust their doctors, even if they don’t know what to do with their complaints. ‘Without that relationship of trust, we won’t get anywhere anyway.’

Harriet Carroll is still active on social media, but her message has changed. Now she tries to bring nuance to the discussions. ‘I’m trying to give credence to the fact that chronic vaccine reactions can occur, and that we need to investigate them to understand the underlying mechanisms, make vaccines safer and find treatments.’

Schieffer, meanwhile, continues with his work. “Many people have suffered to protect others. Young managers, lawyers, doctors, nurses, teachers. They wanted to protect others and they ended up without a job or even in a wheelchair and nobody takes them seriously.’ He considers speaking out in the media as part of his job. ‘Someone has to stand up for these people. Let’s give science a chance to solve this. We can do it.’

This article was made possible with the support of Fonds 1877, the Democracy and Media Foundation, the Trip Fund of the Association for Science Journalism and Communication and the Special Journalistic Projects Fund FBJP.


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