What is Long Covid?

He aha te Kowheori Roa?

Long Covid is a patient-created term to describe when the symptoms from a Covid-19 infection never resolve.

Long Covid is also known as post-COVID-19 syndrome, post-COVID-19 condition, post-acute sequelae of COVID-19 (PASC), and chronic COVID syndrome.

The term ‘Long Covid’ can be misleading, as the illness is not simply an extension of the acute phase of the virus. The disease can morph into something far more debilitating and complex. Some people improve with time, others stay stagnant, but many get worse. 

It’s important to note that post-viral illnesses have been recognised as valid conditions for more than a century. Their effects can be long term and very disabling.  Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) is one such condition, and it has many similarities.  In fact one study found that approximately 60% of people with Long Covid will qualify for a diagnosis of ME/CFS.  It is therefore helpful to learn from the ME community, and organisations such as ANZMES and ME Support have a wealth of information and advice for managing life with a post-viral illness.

Medical and scientific understanding of the mechanisms that cause post-viral illness is currently limited, though with newer scientific techniques, scientists are making progress now.  We can remain hopeful that diagnostic tests and treatments will come.

In the meantime it is important to rest, take care of your mental health, stay hopeful, and find support.

Kia kaha.

 

How common is Long Covid?

He aha te auau o te Kowheori Roa?

Most studies state that 10–20% of people who contract the virus go on to develop Long Covid, but a few studies have concluded it could be as low as 5% or as high as 30%. The discrepancy between percentages is because studies use different metrics for identifying Long Covid. There’s not one sole definition of Long Covid or an agreed symptom pattern. Long Covid can lead to more than 200 symptoms, ranging from annoying to incapacitating.

These factors – and the inconsistent, cyclical nature of the disease – make it complex to survey. However, the UK Office for National Statistics (ONS) discovered that 2.8% of the British population (1.8 million people) reported having Covid-19 symptoms that lasted more than a month. In the US, the latest data from the CDC shows that as of January 2023, 15% of all adults in the US reported having had Long Covid symptoms at some point.

Can anyone get Long Covid?

E taea ana e te Kowheori Roa te pā atu ki ngā tāngata katoa?

Yes. It can happen regardless of age, how severe their infection was, or what their health was like before catching Covid-19. Both children and adults get Long Covid.  For more information on children and long covid see here.

How long does Long Covid last for?

He aha te roa o te Kowheori Roa?

There’s no set time limit. Some people recover after a few months, others take a couple of years and there are many people still sick from their first infection in March 2020.

Does the severity of the infection increase the chances of developing Long Covid?

E nuinga ake ana te tūponotanga o te Kowheori Roa mēnā ka nui haere te kino o te pokenga?

No. In fact, most Long Covid patients say they had a mild acute infection. Furthermore, there are many people who had a symptom-free infection and went on to develop Long Covid afterwards.

Does Long Covid start straight after infection?

E tīmata ana te Kowheori Roa whai muri pū i te pokenga?

Long Covid can develop straight after the acute infection, but it often takes weeks and even months for the illness to develop.  Sometimes people think they have completely recovered from the acute infection, then Long Covid creeps in later.

Why does Long Covid happen?

He aha te Kowheori Roa e puta mai nei?

There is no clear answer to this. More research is needed, but multiple theories are converging on an abnormal immune response, leading to effects on the metabolic and blood-clotting systems. Additionally, hidden viral reservoirs may persist in some people.

 

Our website will share research developments as they happen.

Do vaccines prevent Long Covid?

E kaupare ana ngā rongoā āraimate i te Kowheori Roa?

Research is still ongoing. One study, published in Nature Medicine, showed vaccines reduce the chance of Long Covid by about 15%. But given the increased transmissibility of Omicron, it is thought that the number of people developing the disease is increasing, not decreasing.

Are reinfections bad for you?

He kino rānei māu mēnā i tōaitia ngā pokenga?

Reinfections are not risk free. A huge study published in November 2022 showed the short-term and long-term health risks increase each time you catch Covid-19.

Researchers surveyed 5.3 million people from the US Department of Veterans Affairs, and compared the health of those thought to be Covid-free from March 2020 to April 2022 with 443,000 people known to have one Covid infection and 41,000 people who tested positive twice or more. People who had Covid-19 reinfections were three times more likely to suffer heart problems and 1.6 times more likely to have brain changes. They were three times as likely to be hospitalised and twice as likely to die than those with only one infection.

Do reinfections increase your chance of Long Covid?

E nuinga ake ana te tūponotanga o te Kowheori Roa mēna i tōaitia ngā pokenga?

The latest data from the UK Office for National Statistics showed the risk of developing Long Covid declined from 4% after the first infection to 2.4% after the second infection. So although there is a reduction in the risk, there is still a risk.

What’s the best way to prevent Long Covid?

Me aha kia kaupare tika i te Kowheori Roa?

The most obvious way is to avoid catching Covid-19 in the first place. Of course, this can seem impossible if you have work, children at school and other social commitments. However, there are many ways to reduce the probability of infection even if you engage in social activities.

  • Take up offers of Covid-19 vaccines/boosters.
  • Meet outdoors where possible, as ventilation significantly reduces the spread of Covid-19.
  • If you have to meet indoors, make sure to open windows to create air flow
  • Wear a well-fitted, high-grade mask such as an N95 or FFP3 when entering crowded indoor spaces.
  • Research has shown that k12 probiotics, which can be bought as lozenges to dissolve in the mouth, can be helpful in preventing Covid-19 infection.

If you do get infected, rest as much as you can.  Exercising too much or too soon can increase your risk of getting Long Covid.  This pdf from Physiotherapy New Zealand contains a valuable flowchart to help you assess whether you are able to exercise.

PNZ Exercise After COVID Flow Chart

We understand that rest is a privilege, and those with children and work often do not have the luxury of resting. But try as much as you are able.  Talk to your employer about time off and graduated return (see more information here) and to friends and family about helping out with childcare.

What can I do to treat my Long Covid?

Me aha ahau kia whakatika i taku Kowheori Roa?

  • Rest. Arguably the single most important thing is to not try and ‘push through it’. Your body needs time to heal, so rest, rest and more rest. This includes resting your brain as well as your body – working from bed is not resting!
  • Don’t exercise. Gentle stretching and/or yoga can help relax people, but intense exercise often exacerbates people’s symptoms and prolongs recovery.
  • Medication. There is no one Long Covid medication, but some people find various medicines can help some of their symptoms. Speak to your doctor about this.

What can my doctor do? Will ACC help?

Ka aha rānei taku tākuta? Ka āwhina mai a ACC?

If your doctor is understanding and patient, they can be a huge source of emotional and practical strength. One of the most important aspects of going to your doctor is their ability to refer you to private specialists. Otherwise, you will need your doctor to make a request through the public health system. Bear in mind that the wait times can be very long. If you have private health insurance, this can shorten wait times considerably.

Most Long Covid patients are unlikely to qualify for ACC, as it is very hard to prove an infection was picked up at work.  More cases have been covered in the last year and therefore, it is always worth pursuing this path. 

What can my whānau/family do?

Ka aha rānei taku whānau?

Long Covid can take a huge toll on families and loved ones. It often requires a big shift in the household dynamic, as everyone grapples with the effects of the disease. The patient can help by clearly communicating what they are capable of on any given day. Good organisation and creating a care routine can help manage stress and expectations.

There’s lots of specific advice for whānau/family elsewhere on our website.

What can my employer do?

Ka aha rānei taku kaituku mahi?

As an employee, you have the legal right to “reasonable accommodations” such as physical and logistical adjustments in your workspace. This right comes through the Human Rights Act 1993 and the New Zealand Disability Strategy.

This means a good employer could provide you with remote-working options, a phased return to work, flexible hours, and a reduced physical and/or cognitive load so you can better manage your condition.

Can the vaccine cause Long Covid?

No. However, 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 Long Post Covid Syndrome 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. When accurate data is collected about where symptoms come from, it enables prevention and treatments to be improved.

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

  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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?
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