Long COVID: student-made resources

For some people, COVID-19 can cause symptoms that last for a long time after the initial infection has resolved. This is described as Long COVID.

Physiotherapy MSc students Emily Linney and Hannah Fairris created this page during their six-week placement with the CSP. 

To develop this resource, Emily and Hannah collaborated with students, newly qualified physiotherapists, physiotherapists working within Long COVID services, and people living with Long COVID. This pageincludes the information they feel is the most important for students to learn to not only increase their understanding and knowledge of Long COVID, but to explore safe and effective care approaches.

From being very physically strong and emotionally strong, I feel changed, I just don’t feel the same as I did. It can be frustrating because a lot of people just don’t understand, and I just don’t have the energy anymore to explain it to people.

Senior Physiotherapist currently living with Long COVID

Contents:

  1. Signs and symptoms
  2. Diagnosis
  3. Demographics - who is affected?
  4. Precautions
  5. Treatment - rehabilitation approach
  6. Busting myths
  7. Useful links and references

 

Signs and symptoms

The signs and symptoms of Long COVID are wide-ranging and can vary from person to person. This is because Long COVID is a multi-system condition affecting the ACE 2 receptor, which is expressed in almost every tissue type in the body.

Even things like being able to roll over in bed without being short of breath or make my own lunch and get dressed, that is my current goal, to get dressed.

It’s a really bizarre one but when I get really tired, like when I have really overdone it, I just can’t speak and sometimes I can manage one word answers.

    Children's Physiotherapists currently living with Long COVID

Long COVID infographic

How is Long COVID diagnosed?

Eventually I saw a consultant who told me “Without a doubt you’ve got Long Covid”. It didn’t make much a difference to the management, but I felt so validated that I wasn’t just unfit. Its been easier to handle since then.

      Senior Physiotherapist currently living with Long COVID.

 

 

Frequently Asked Questions:

Is there a test for Long COVID?

  • Long COVID is a diagnosis of exclusion, which means there is no specific test for it, and other conditions that cause similar symptoms should be ruled out beforehand.

    The definition of Long COVID according to the NICE guidelines are “the symptoms that continue, or develop, after acute COVID-19 infection, which cannot be explained by an alternative diagnosis”.


What is the first step to diagnosing Long COVID?

  • Service users should be assessed for any serious complications including:
    • Severe oxygen desaturation on exercise
    • Signs of severe lung disease
    • Chest pain that could be from a cardiac problem
    • Multisystem Inflammatory Syndrome (in children)
    If a person presents with one of these complications, they should have this addressed as a priority.

What is the most important indicator for a Long COVID diagnosis?

  • The most important cluse to indicate a Long COVID diagnosis will come from a person’s story of their symptoms.

    Its important to take a comprehensive history, including information about physical health, psychological wellbeing, and functional ability. Any examination that is done should consider all of these factors as well.

    A good history can reveal some particular patterns that make Long COVID a more likely diagnosis.

    These could be things like:

    • their symptoms started after an acute illness that sounds like it was COVID-19.
    • It could be that someone’s functional ability has significantly reduced over quite a short period of time
    • or it could be that they have PESE (post-exertional symptom exacerbation) where their symptoms getting worse after physical, cognitive or social exertion.

    We need to remember that Long COVID has wide ranging and fluctuating symptoms, and these can change over time.


Are there any tests someone should have if Long COVID is suspected?

  • An exercise tolerance test should only be considered if it safe to do so for that person. It should be considered on a case-by-case basis, as exertion can be unsafe for some people living with Long COVID. The test itself should also be modified to account for that person’s baseline level of ability. During the tolerance test we should monitor heart rate, blood pressure, breathlessness and oxygen saturation.
  • Investigations these should be reactive based on what the person’s symptoms are, as there is no specific set of tests thats rule in or rule out Long COVID.

    The NICE guidelines advise to consider:

    • blood tests, as a broad screen of health
    • a chest xray within 12 weeks of acute illness
    • an exercise tolerance test if appropriate
    • blood tests can be used as a broad screen of health and to rule out other conditions. Guidelines suggest to include screens for the heart, liver, kidneys, and thyroid

    A chest xray should be done within 12 weeks of acute illness in order to assess for signs of lung disease, particularly lung fibrosis. It should be kept in mind, however, that a clear chest xray does not exclude all lung diseases.


If someone hasn’t had a confirmed history of COVID-19, can we exclude Long COVID?

  • Its important to remember that not everyone was able to access a COVID test at the time they were acutely unwell. In fact, most people living with Long COVID have no history of a positive COVID test, and were never hospitalised.

    For alpha and beta variants of COVID-19, a loss of taste or smell was an incredibly sensitive sign for being positive for infection. If someone describes this in their history, it increases the suspicion that they may have had COVID-19 in the past.

    A lack of positive COVID test therefore shouldn’t exclude someone from being diagnosed with Long COVID. This is becoming less of a problem now, but it was a bias faced by those who believe they had COVID when access to testing was difficult.


What are the key messages surrounding Long COVID diagnosis?

  • Long COVID is a diagnosis of exclusion. Investigations are aimed at ruling out other conditions and assessing for safety, so a comprehensive history is currently the most valuable tool for reaching a diagnosis.
  • Its important to keep safety as a focus. If someone presents with serious complications its important that these are addressed as a priority, as Long COVID can affect almost any system in the body.
  • Finally, we need to remember that having no positive COVID test in the past doesn’t mean someone can’t have Long COVID, as there were many reasons that people may have been unable to access PCR testing at the time of their acute illness.
  • For more information, read the  NICE guidelines.


 

Long COVID - demographics

Who is affected by Long COVID?

I consider myself very lucky to be back working in healthcare, even though its not how it used to be. I’m just thankful to be here really.

      Senior Physiotherapist currently living with Long COVID

Demographic data suggests that the “patient profile” of those at risk of COVID-19, and those at risk of Long COVID are different. This means that amongst people who have had COVID-19, there is not an equal chance of going on to develop Long COVID.

Age - Long COVID

Age

  • Those aged over 70, and particularly those over 80, are much more likely to be diagnosed with COVID-19. However, more people with Long COVID are aged between 35-70.

gender - Long COVID

Sex

  • For COVID-19, men are slightly more likely than women to be tested positive for infection. For Long COVID, there is a more notable skew towards women, meaning that women with COVID-19 are more likely to develop Long COVID than men.

Ethnicity - Long COVID

Ethnicity

  • People self-reporting as Black or “Other” ethnic groups are more likely to test positive for COVID-19. The group least likely to test positive for COVID-19 are those self-reporting as White. For Long COVID, there is much more even representation across ethnic groups, although there is a slight skew towards those self-reporting as White.

Deprivation - Long COVID

Socioeconomic deprivation

  • Results are quite consistent between both COVID-19 and Long COVID, in that those in the lower Index of Multiple Deprivation quintiles (more socioeconomically deprived) are more likely to have the condition.

Health - Long COVID

Pre-existing health conditions

  • Incidence of Long COVID appears to be correlated to self-reported level of disability from a pre-existing health condition. Those reporting no pre-existing condition, or a pre-existing condition that does not limit their activity, represent the smallest cohorts of those with Long COVID. Those reporting that their pre-existing condition limits them moderately or severely represent the larger groups of those with Long COVID. It is difficult to compare this directly to incidence of acute COVID-19 infection, as data regarding pre-existing conditions relates to the risk of mortality than the risk of infection.

Occupation - Long COVID

Occupation

  • Those working in health or social care sectors represent the majority of people living with Long COVID. Again, occupation data for Long COVID is not comparable with that for COVID-19 infection. There have been occupational groups identified who are more likely to suffer from severe disease or death from COVID-19, but this is not consistent with rate of infection.

 

Precautions to physiotherapy interventions

Ruling out serious pathology and screening for other serious conditions is essential for safe rehabilitation for individuals. No harm should come to patients due to engaging with physiotherapy.

The consultant told me I was just unfit. Because he said that, I tried to power walk for about a minute at a time, but my chest hurt so much and I would go a horrid purple colour. I checked myself with a pulse oximeter, my pulse was sky high and my sats were 85.

      Senior Physiotherapist currently living with Long COVID

(View the video's transcript.)

Rehabilitation approach

Building a strong therapeutic relationship is essential to effective rehabilitations. Keeping in mind those living with Long COVID may have been previously dismissed and unvalidated in their experiences, it is essential as physiotherapists we are compassionate and empathetic.

Reminding me to take it one day at a time and not get too excited about big plans in the future of, let’s aim small to begin with and then take it from there.

(View the video's transcript.)

Busting myths about Long COVID

As Long COVID is a new and poorly understood condition, there are many misconceptions about it. These can cause people living with Long COVID to face unhelpful biases.

People I’m with seem to forget about it because I look well, they walk too fast and I just can’t keep up with them.

     Senior Physiotherapist currently living with Long COVID

Myth

True / False?

Long COVID, Post-COVID Syndrome, Long-Haul COVID and Long Term COVID Syndrome are all the same thing

True. 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.

You have to have had COVID-19 in order to develop Long COVID

True but it is important to be aware 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
  • Even those with asymptomatic COVID-19 infection can go on to develop Long COVID

Long COVID is a rare complication of COVID-19

True. But not that 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.

The more ill someone was with COVID-19, the more likely they are to develop Long COVID

False. 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.

You can catch COVID-19 from people with Long COVID

False. 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.

There are no specific risk factors that make you more likely to develop Long COVID

True (for now). 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.

People can recover from fatigue by sleeping properly

False. 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.

Patients with Long COVID get better with exercise

False. 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.

Physical activity and exercise are different things

True. 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.

People living with Long COVID don’t feel believed when they try to seek help

True. Those living with Long COVID site 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”

Long COVID is a respiratory disease

False. 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.

Long COVID is a medicalisation of depression/anxiety

False. It's the other way around. People living with Long COVID are at risk of developing depression or anxiety as a secondary factor, and often site struggling to cope with loss of function as a reason for this.

 

Useful links and references

Guidelines:

Reviews  

Patient-created websites  

Podcasts  

 

References 


Acknowledgments

With sincerest thanks to: Alison Oliver, Felicity Jeyes, Joseph Shanks, Wilma Hudson, Jenny Riley, and Amy Smith for their valued contributions to this resource.

 

 

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