Tag: anecdotes

Can Vaccines Cause POTS?

Have you ever heard of POTS?

“In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising.”

NIH Postural Tachycardia Syndrome Information Page

POTS or postural orthostatic tachycardia syndrome was first identified in the early 1990s and can cause many debilitating symptoms, such as dizziness, headaches, and fatigue.

What Causes POTS?

We don’t know what causes POTS.

“The term “POTS” was coined in 1993 by a team of researchers from Mayo Clinic, led by neurologist Dr. Philip Low. However, POTS is not a new illness; it has been known by other names throughout history, such as DaCosta’s Syndrome, Soldier’s Heart, Mitral Valve Prolapse Syndrome, Neurocirculatory Asthenia, Chronic Orthostatic Intolerance, Orthostatic Tachycardia and Postural Tachycardia Syndrome.”

Dysautonomia International on POTS

Well, we know that POTS is caused by a malfunction of the patient’s autonomic nervous system (dysautonomia), but we don’t know always know what causes or triggers that malfunction.

Sometimes we do though, as POTS has been associated with other types of dysautonomia, like Ehlers-Danlos Syndrome and Mast Cell Disorders.

And genetics may play a role in some people with POTS.

Can Vaccines Cause POTS?

It shouldn’t be surprising that some folks think that vaccines could be associated with POTS.

“Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age.”

NIH Postural Tachycardia Syndrome Information Page

That’s right.

As more people were becoming aware of POTS, some of them were getting vaccinated for HPV.

But that correlation certainly doesn’t mean that vaccines cause POTS.

“POTS is a condition that causes lightheadedness or fainting and a rapid increase in heartbeat upon standing. The cause is unknown, but doctors think POTS may be associated with a number of risk factors and syndromes, including: a recent viral illness, physical deconditioning, chronic fatigue syndrome and nervous system problems.”

CDC on Can HPV vaccines cause POTS?

And studies have confirmed that, including:

  • In 2015, the European Medical Association confirmed evidence that HPV vaccines do not cause complex regional pain syndrome (CRPS) and postural orthostatic tachycardia syndrome (POTS)
  • A review of VAERS reports that “did not detect any unusual or unexpected reporting patterns that would suggest a safety problem” with HPV vaccination, including extra cases of POTS
  • A study in the UK using the MHRA’s Yellow Card passive surveillance scheme found no increase in reports of chronic fatigue syndromes following the introduction of Cervarix
  • A large, nationwide register-based study from Norway found no indication of increased risk of chronic fatigue syndrome/myalgic encephalomyelitis following HPV vaccination
  • A large cohort study of over 2 million young girls in France found no risk for autoimmune diseases (including neurological, rheumatological, hematological, endocrine, and gastro-intestinal disorders)
  • A large cohort study of girls in Sweden with pre-existing autoimmune diseases found that HPV vaccination was not associated with increased incidence of new-onset autoimmune disease (49 types of autoimmune diseases)

Contrast those large studies that are evidence against any association between vaccines and POTS with the case reports, anecdotal evidence, and vaccine scare stories that say there is.

“There is currently no conclusive evidence to support a causal relationship between the HPV vaccine and POTS. It is of utmost importance to recognize that although temporal associations may be observed, conclusions of causality cannot be drawn from case reports and case series due to the small sample size and lack of control population inherent to this type of scientific literature. If POTS does develop after receiving the HPV vaccine, it would appear to do so in a small subset of individuals and would be difficult to distinguish from the normal prevalence and incidence of the disorder.”

Butts et al on Human Papillomavirus Vaccine and Postural Orthostatic Tachycardia Syndrome: A Review of Current Literature

What about other vaccines? Could they cause POTS?

Folks should remember that a case report is basically a gloried anecdote and is not the kind of evidence you should use to make decisions about vaccinating and protecting your kids.
Folks should remember that a case report is basically a gloried anecdote and is not the kind of evidence you should use to make decisions about vaccinating and protecting your kids.

While the focus has been on the HPV vaccines, an issue with other vaccines causing POTS would have been picked up with our current vaccine safety systems.

But why has the focus been on the HPV vaccines?

It is an easy association to notice, after all POTS begins to occur right around when the HPV vaccines are given (teen years) and the HPV vaccines are given in many different countries. Most other vaccines that we give to teens in the United States, including Tdap and the meningococcal vaccines, aren’t as widely used in other countries.

But remember, POTS isn’t a new diagnosis. That anti-vaccine groups are latching onto it to scare parents away from vaccinating and protecting their kids is.

What to Know About Vaccines and POTS

There is no evidence that vaccines, especially the HPV vaccines, cause POTS.

More on Vaccines and POTS

Can Vaccines Cause Transverse Myelitis?

Transverse myelitis is not common, so most people probably haven’t heard of it.

“The term myelitis refers to inflammation of the spinal cord; transverse refers to the pattern of changes in sensation—there is often a band-like sensation across the trunk of the body, with sensory changes below.”

Transverse Myelitis Fact Sheet

The symptoms of transverse myelitis depend on where the inflammation occurs and sometimes, on the cause. They can include back pain, weakness or paralysis of the legs and arms, paresthesias (sensory alterations in the neck, arms, or legs), and bowel and bladder dysfunction.

What Causes Transverse Myelitis?

An MRI of a teen with transverse myelitis.
An MRI of a teen with transverse myelitis that resolved after total body irradiation therapy was stopped.

Many things can cause transverse myelitis.

Possible triggers can include:

  • infections – following bacterial, viral, fungal, and parasitic infections
  • immune system disorders
  • inflammatory disorders
  • vascular disorders

Unfortunately, it isn’t usually known what causes someone to develop transverse myelitis.

There are treatments though and many people with transverse myelitis have at least a partial recovery, although it may take months to years.

Transverse myelitis is not thought to be genetic and rates are highest in two age groups – those between 10 and 19 years (when many preteens and teens get vaccinated) and those between 30 and 39 years.

Can Vaccines Cause Transverse Myelitis?

Have you heard that vaccines can cause transverse myelitis?

“Vaccines currently routinely recommended to the general population in the U.S. have not been shown to cause transverse myelitis.”

Institute for Vaccine Safety on Do Vaccines Cause Transverse Myelitis?

While there are some case reports that tell of a temporal association between getting a vaccine and later developing transverse myelitis, the evidence does not support any association.

Why do we see these case reports?

Just like SIDS, autism, type 1 diabetes, and many other conditions, transverse myelitis has a background rate of disease or a number of cases that you can expect to occur in a given population. Once you know this background rate, you can then predict how many people will coincidentally develop transverse myelitis within one, seven, forty-two, or more days after they are vaccinated.

With a background rate of about 0.36 per 100,000 people, if one million get a vaccine, you would expect:

  • at least 1 to 2 of them to develop transverse myelitis coincidentally after 1 day
  • at least 1 to 2 of them to develop transverse myelitis coincidentally after 7 days
  • at least 2 to 4 of them to develop transverse myelitis coincidentally after 42 days

If the rate is higher than that, it could indicate a problem.

Let’s do the math.

There are about 1,400 new cases of transverse myelitis in the United States each year.

How many vaccines are given? About 286 million doses – each year. Some of those are given on the same day, but that would still mean that 100s of people should be getting transverse myelitis within 1 to 7 days if vaccines were a cause.

They aren’t.

“Correlation does not imply causation.”

In fact, an Institute of Medicine report, Adverse Effects of Vaccines: Evidence and Causality, dismissed most of the evidence for an associated between vaccines and transverse myelitis as insufficient and lacking.

And further studies found no association:

  • A Vaccine Safety Datalink study, Acute Demyelinating Events Following Vaccines: A Case-Centered Analysis, looked at nearly 64 million vaccine doses of vaccines and also “found no association between TM and prior immunization.”
  • Another study, Maternal safety of trivalent inactivated influenza vaccine in pregnant women, used “a large, geographically diverse, retrospective cohort of pregnant women” and found no cases of transverse myelitis.

Not only do vaccines not cause transverse myelitis, but many vaccine-preventable diseases can. So vaccines can likely protect you from developing transverse myelitis by protecting you from these diseases!

What to Know About Transverse Myelitis

Vaccines do not cause transverse myelitis, although many vaccine-preventable diseases can.

More on Transverse Myelitis

Anecdotes as Evidence

Evidence is evidence, right?

Not really.

There is a hierarchy of evidence, from weakest to strongest, that help folks make decisions about science and medicine.

In an age when everything is evidence of something, remember that anecdotes are not scientific evidence.

That’s why you can’t just search PubMed, read abstracts, and say that you have done your research. For any study, you have to review and judge the quality of the evidence it provides.

Is it a case report (a glorified anecdote), case series, or animal study (lowest quality evidence) or a systemic review or meta analyses (highest quality evidence)?

What about case control studies, cohort studies, and randomized controlled trials? They lie somewhere in between on the hierarchy of evidence scale.

Anecdotes as Evidence

And where do anecdotes fit in?

“Anecdotes are uncontrolled subjective observations. I have often criticized reliance on anecdotes, which is especially problematic in medicine. The problem with anecdotes is that they are subject to a host of biases, such as confirmation bias. They are easily cherry picked, even unintentionally, and therefore can be used to support just about any position. For every anecdote, there is an equal and opposite anecdote.”

Steven Novella on The Context of Anecdotes and Anomalies

Anecdotes are not scientific evidence.

Unfortunately, some people use anecdotal evidence to make some very serious decisions, including skipping or delaying their children’s vaccines, leaving them unvaccinated and unprotected.

“An anecdote is a story – in the context of medicine it often relates to an individual’s experience with their disease or symptoms and their efforts to treat it. People generally find anecdotes highly compelling, while scientists are deeply suspicious of anecdotes. We are fond of saying that the plural of anecdote is anecdotes, not data.”

Steven Novella on The Role of Anecdotes in Science-Based Medicine

Believing that anecdotes are important scientific evidence is also what often drives some pediatricians to pander to fears that parents may have about vaccines, helping them create non-standard, parent-selected, delayed protection vaccine schedules.

What else do you need to know about anecdotal evidence?

Anecdotes are basically the fuel of the anti-vaccine movement.

“With little or no evidence-based information to back up claims of vaccine danger, anti-vaccine activists have relied on the power of storytelling to infect an entire generation of parents with fear of and doubt about vaccines. These parent accounts of perceived vaccine injury, coupled with Andrew Wakefield’s fraudulent research study linking the MMR vaccine to autism, created a substantial amount of vaccine hesitancy in new parents, which manifests in both vaccine refusal and the adoption of delayed vaccine schedules.”

Shelby et al on Story and science

Well, anecdotes and fear – often combined in vaccine scare videos.

If you have been making your vaccine decisions based on anecdotes, it is time to do a little more research and get better educated about vaccines.

What to Know About Anecdotes as Evidence

Anecdotes, although they are easy to believe, are not scientific evidence, and certainly shouldn’t persuade you that vaccines aren’t safe, that vaccines aren’t necessary, or that vaccines are associated with autism.

More on Anecdotes as Evidence

 

Vaccine Injury Stories That Scare Parents

It is not uncommon to hear about parents having ‘panic attacks’ over the idea of vaccinating their kids.

“…many parents are inundated with horror stories of vaccine dangers, all designed to eat away at them emotionally while the medical and scientific communities have mounted their characteristic response by sharing the facts, the data, and all of the reliable peer-reviewed and well-cited research to show that vaccines are safe and effective.”

Federman on Understanding Vaccines: A Public Imperative

Or simply becoming anxious over an upcoming appointment for routine immunizations or to get caught up on vaccines.

What’s fueling all of this anxiety?

Vaccine Injury Stories That Scare Parents

Some of it is likely from the vaccine injury stories that they read  or videos they watch.

As parents get better at spotting the myths and misinformation behind the anti-vaccine movement, we are seeing more and more vaccine injury stories pop up to scare them.

“…recognizes the importance of examples—testimonials and stories—that are the lifeblood of vaccine-hesitant beliefs.”

Nathan Rodriguez on Vaccine-Hesitant Justifications

Vaccine injury stories aren’t new though.

These types of anecdotal stories were very popular when folks used to think that the DPT vaccine was causing a lot of side effects. It wasn’t though. And it was soon proven that the DPT vaccine didn’t cause SIDS, encephalitis, non-febrile seizures, and many other things it was supposed to have caused.

“Anecdotes – about a new miracle cure, a drug that is not being made available on the NHS, or the side effects of treatment, or some environmental hazard – sell product. Data, on the other hand, which take us towards the truth about these things, are less popular. Anecdotes, however many times they are multiplied, do not point the way to reliable knowledge. As the aphorism says, “The plural of anecdote is not data”.”

Raymond Tallis on Anecdotes, data and the curse of the media case study.

That anecdotes “sell” better than data may be one reason why you see them so often on anti-vaccine websites. Another is that they simply don’t have any good data to use as evidence!

Are Vaccine Injury Stories True?

Vaccines are not 100% safe, so there is no doubt that some vaccine injury stories are true.

There is also no doubt that what many people perceive to be vaccine injuries have actually been proven to not be caused by vaccines, from allergies and eczema to autism and MS.

“In the absence of a specific etiology for ASDs, and a tendency among parents of children with a disability to feel a strong sense of guilt, it is not surprising that parents attempt to form their own explanations for the disorder in order to cope with the diagnosis.”

Mercer et al on Parental perspectives on the causes of an autism spectrum disorder in their children

Also keep in mind that in addition to the many so-called vaccine induced diseases, there are many historical vaccine injury stories that have been shown to be untrue:

  • the first deaf Miss America did not have a vaccine injury
  • Johnnie Kinnear supposedly began having seizures 7 hours after getting a DPT vaccine, when he was 14-months-old, but medical records actually shown that his seizures started 5 months after he received his vaccines
  • Dravet syndrome now explains many severe seizures associated with vaccinations

And at least one of Wakefield’s own followers – a mother who claimed that the MMR vaccine caused her son’s autism, was “dismissed as a manipulative liar” by a court in the UK.

Vaccine Injury Stories are Dangerous

Do vaccine injury stories have a purpose? They might help a parent cope with a diagnosis in the short term, but vaccine injury stories are dangerous in so many ways.

We have seen how they create anxiety for many parents, which can scare them away from vaccinating and protecting their kids from life-threatening vaccine-preventable diseases.

What else can they do?

Driving a wedge between parents and pediatricians does not help autistic kids.
Driving a wedge between parents and pediatricians does not help autistic kids.

They can certainly build up mistrust towards pediatricians and other health professionals. That is one way that the anti-vaccine movement continues to hurt autistic families. They also can lead parents to think that their “vaccine injured” child is “damaged” in some way.

And they push parents towards dangerous, unproven, unnecessary, and expensive alternative treatments. It shouldn’t be a surprise that many of the sites and forums that push vaccine injury stories also promote a lot of dangerous advice.

From recommending goat milk for your baby and skipping your baby’s vitamin K shot to various kinds of detoxing “treatments,” these are not the folks you want to trust with the health of your child.

What to Know About Vaccine Injury Stories

Vaccine injury stories prey on the fears of parents, help drive a wedge between them and their pediatricians, and are considered by many experts to be the lifeblood of the anti-vaccine movement.

More on Vaccine Injury Stories