Perhaps you’ve heard that the vaccine causes Long Covid? Or that only vaccinated people can get it? Or that all Long Covid is created by the vaccine?  These are all factually incorrect.

In very rare cases, immediately after vaccination, a very small number of people will suffer from what is known as Long Post Covid Vaccine Syndrome or LPCVS.  

Why is that not considered Long Covid?

Whilst there are similarities in mechanisms and symptoms, it is important that they are not approached or diagnosed as one and the same. If your GP diagnoses you with ‘Long Covid from the vaccine’ it is important that it is distinguished from ‘Long Covid from the virus’. This is to ensure people suffering from LPCVS are given the specific support they need. 

Specific support for specific syndromes

Long Covid support groups have been set up by Long Covid patients and relate specifically to the aspects of it.  As a result of the rife misinformation and politicisation of the subject, often patient-led groups have strong stances about minimising vaccination conversations. This is why we encourage LPCVS sufferers to seek out groups that are specific to their syndrome. For more information on research around LPCVS please click here

Who gets Long Covid?

About 10% of people who contract Covid-19 don’t recover the same as their peers, and will go on to have long-term effects that can last between weeks, to months, to years.  Their symptoms are wide ranging, with up to 200 symptoms being reported. It’s “turning on” genetic conditions, conflating unknown issues and fast-tracking pre-existing ones.

It can happen to ANYONE.

Your vaccination status is irrelevant

Actually, that’s not wholly true.  You’re less likely to get Long Covid if you have been vaccinated.

Over the last few weeks we have been running a campaign on social media to promote the Long Covid Registry (a way to measure prevalence of symptoms in New Zealand). We were shocked by the immediate backlash it received on social media – hundreds and hundreds of comments. Because Facebook doesn’t allow advertisers to turn off comments, it left a wide gap for those who believe misinformation, to use the platform to spread their beliefs. Unsurprisingly, some of those beliefs were extreme and they were easy enough to block and move on (no one has time for blatant racism, abuse and disinformation).

However, it did show us that there has been an escalating rhetoric that is concerning and should sound an alarm to the medical community. To summarise, there appears to be an increasing belief and misconception (or at least from a noisy collective) that “Long Covid only exists in the vaccinated”.

We noted a mixture of ‘real people’ who wholly believe what they’re saying and ‘fake accounts’ deliberately trying to create division.  About half of those who commented were Māori and at least a quarter were living in rural places. These are important communities where health inequities are already prevalent. A misplaced fear of vaccinations could have dire consequences. 

Anyone can get Long Covid – vaccinated or not 

As the writer of this article, I’m going to use myself as an example as evidence – I got sick in March 2020, before vaccines were available.  I wasn’t vaccinated for two more years (as I was too sick to be able to).  Once I eventually got my vaccine, I actually started to get better (as has been the case for a lot of people).  

We work with thousands of Long Covid patients in Aotearoa who either have the same story (they got sick from covid before vaccines were available) or similar (were sick after testing positive from covid and then never got better. Yes, they were vaccinated, but they did not have a reaction).

Due to the contentious nature of this subject, as a group (Long Covid Support Aotearoa) we have steered clear of being involved in any discussion about vaccinations. As evidenced in our recent ad campaign, it brings with it some thorny, complex and unfortunately nasty undertones. It doesn’t take long for a rational conversation to turn either nasty, violent or extreme. As a result of this (and a desire to focus on getting people well), we issued a blanket-ban on vaccine discussion in order to ensure a safe space for our group members who are already vulnerable and this topic was not applicable to. 

The hardcore “anti-vax movement” unfortunately won’t stop at trying to find ways to infiltrate our group, continuously creating fake profiles, lying on forms in order to gain access to spread their often hateful views. I’ve seen and heard of people who have died of Covid-19 or entirely unrelated illnesses and then have the anti-vax movement hijack the tragedy and claim it as some kind of victory. The impact on vulnerable families is horrifying. 

If the discussion was just about adverse vaccine reactions, then it would be a far simpler subject. The medical fraternity freely admits that there will always be a percentage of people (albeit a very small one) who will have an adverse reaction to any vaccine – it’s a sad but scientific reality of protecting the masses. By collecting data they can continue to improve the vaccines. The reactions can be wide-ranging from minor (an irritation or headache) to major (stroke or death). The majors are not common and they’re transparently tracked. This is all well-documented and researched.  

The media headlines haven’t helped by using language that is confusing for people (e.g., “Long Covid-like symptoms”) and General Practitioners (GPs) diagnosing and coding LPCVS as Long Covid create potentially more harm than help. The patients will find themselves unwelcome (for the aforementioned reasons) in the Long Covid specific groups and cast out into no-mans-land and often then into hardcore anti-vax groups where they are vilified for having had the vaccine at all.

The well-regarded research papers (which are often cited by the anti-movement as proof of reactions) clearly state, “these side effects have specific similarities and differences to acute COVID-19 …a new term should be used to refer to these side effects” They go on to use the Long Post Covid Viral Syndrome terminology, and the references are now in common use. Specific research is underway both locally and internationally, which will mean a greater understanding of prevalence, causation and hopefully better support for those people in the future. 

The Long Covid Support Aotearoa team have had to fight hard to be listened to over the last three years and have finally made some headway. We need to clearly differentiate our syndromes to clear up any misconceptions. 

If they present the same symptoms, why not just treat them the same?

  1. They are not exactly the same. Those who are sick from the virus and experience Long Covid, experience a wide ranging number of symptoms that can and often escalate over time. Whereas, a post covid vaccination syndrome will experience only a few (which in and of themselves may well be debilitating for those people). There has not been enough research to understand this as yet. There are still only theories and hypotheses. Biomedical research is crucial.
  1. There is evidence to suggest that vaccine reactions happen in those who already had Covid, therefore, how would someone know that it was the vaccine that was the issue? When misinformation flies about, it can lead to people beginning to believe what they hear most often and have negative health outcomes.  
  1. Coupling the syndromes disables them from being researched individually to understand their individual natures and what prevention measures could happen (the answer can’t be ‘no vaccines’). If we can understand why some people react to the virus and some people react to a vaccine, and look at those two issues individually, we’ll have a greater chance of ensuring more people stay healthy in the future. The more research the better.
  1. Due to the politicisation of the vaccines (people who oppose being mandated into having them and the views surrounding this), we’ve seen people who are vaccinated being treated very poorly by people who do not agree with their existence (and vice versa). This means people who need support are not finding it. 
  1. It is very normal human behaviour to take the seed of an idea such as “some people get Long Covid-like symptoms as a reaction to the vaccine” and escalate it to “all Long Covid is a reaction of the vaccine”. Ironically, by conflating the issue those who do have vaccine reactions are likely not getting the support they deserve because of the hate-filled rhetoric that accompanies any vaccine discussion.
  1. Not only does confusing the two syndromes and calling them the same thing, confuse people, it also undermines immunisations in general. If people begin to widely believe that all people who get Long Covid come from vaccine reactions, then people won’t get vaccinated.  We know that vaccines save lives, that’s unrefuted and well documented and science has proven this time and time again. The impact of not being immunised, however, is potentially catastrophic for humanity. There has already been an enormous dip in all vaccinations, which puts the human race at risk of many diseases being able to get a foothold in our societies again. Imagine the impact measles, polio, smallpox would have on all health systems globally and our already vulnerable communities?

It is entirely naive to believe that one article could possibly change the minds of those who are determined to believe what they hold to be true in their mind.  But it is possible for those who have simply been repeatedly fed misconceptions to be redirected towards accurate information. In doing that, we’ll be able to ensure more people are helped and get the support they need no matter what syndrome they have.