Long Covid: frequently asked questions

Are Long Covid, Post-Covid Syndrome, Long-Haul Covid and Long Term Covid Syndrome all the same thing?

Advocacy groups have found that “Long Covid” is most preferred by the people with lived experience of the condition, but the terms are often used interchangeably in publications

Do you have to have had Covid-19 in order to develop Long Covid?

It is important to be remember that:

• Not all people with Long Covid were able to access Covid-19 tests at the time of their acute illness
• For similar reasons, most people living with Long Covid do not have a history of a positive PCR test, especially those who developed symptoms around the first wave when testing wasn't readily available
• Even those with asymptomatic Covid-19 infection can go on to develop Long Covid.

Is Long Covid rare?

Around 1 in 5 people with symptomatic Covid-19 are still unwell after 5 weeks, and around 1 in 10 are still unwell after 12 weeks.

What is the relationship between Covid-19, and Long Covid?

There is no correlation between disease severity and likelihood of developing Long Covid. Most people living with Long Covid did not require hospital treatment at the time of their acute illness. There is the same rate of symptom persistence between those who were hospitalised with Covid-19, and those who were at home

Are people living with Long Covid infectious?

People living with Long Covid are not infectious, however, up to 5% may still produce positive PCR tests. Virology assessments have found that they have enough viral load to show up on a test, but not enough for the virus to be viable in the body, or be able to infect someone else. This can present significant problems for people in terms of whether or not to continue self-isolating.

Are there any risk factors that make you more likely to develop Long Covid?

Currently, the data on this is poor quality and difficult to interpret. It is thought that any trends are not powerful enough to be interpreted as predictive in a medical context. There is some emerging research that those with immune system compromise may actually be protected against developing Long Covid, but this is an area of ongoing study.

Does sleeping better help those who are experiencing fatigue?

There is no medical consensus on the definition of fatigue, however, people living with fatigue describe it as disabling, unrelenting, or not relieved by sleep.

Can people with Long Covid get better with exercise?

For those who have PESE (post-exertional symptom exacerbation) or PEM (post-exertional malaise), the current guidance is to stop, rest and pace activity, as exercise could make them more unwell.

For those who do not have PESE or PEM, they can benefit from a supervised rehabilitation program that includes physical activity, but should have their heart rate, blood pressure and oxygen saturation monitored.

What is the difference between physical activity and exercise?

Physical activity relates to day-to-day movements that are required to cope with activities of daily living (ADLs). Exercise therapy relates to increasing fitness through structured repetitive movements.

For those living with PESE or PEM, the difference between physical activity and exercise is extremely important.

Their rehabilitation should consider: Physical activity → Slowly progressing to include → Exercise therapy

What is the experience of people living with Long Covid in seeking help?

Those living with Long Covid have reported many challenges about accessing help and support, citing a number of reasons for this:

• The often look well.
• Their symptoms can relapse and remit, or change over time.
• They are often younger, working people, so face bias when they say they are struggling to return to their normal life.
• They are often highly motivated people, so can find it difficult to stop, rest and pace.
• Because the condition is new and poorly understood, it can be hard to get helpful information from medical professionals.
• This can sometimes lead them to doubt themselves or think their symptoms are “all in their head”

Is Long Covid is a respiratory disease?

Long Covid can affect almost any organ of the body, and is described as multi-system. A person should not be discounted as potentially living with Long Covid if they do not have respiratory symptoms.