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What is Long Covid?

Long Covid can affect anyone who has had the acute form of the illness, whether or not they received a positive test. Here we explain what Long Covid is, and how best to approach rehabilitation for people living with Long Covid.  If you want to know more, join the CSP / RCOT Lets Talk Long COVID group 

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Where Covid is the acute phase of the illness, Long Covid is defined as symptoms that last beyond 12 weeks.

Long Covid can affect anyone. It impacts on multiple body systems and recovery can be variable, unpredictable and non-linear. Severity of Covid-19 is not a predictor for developing Long Covid.

The truth is we do not yet fully understand the pathophysiology of Long Covid. This is an emerging picture and in the fullness of time, as research on rehabilitation reports back, our approach may adapt and evolve. We recognise the many uncertainties of Long Covid can be unsettling. For the first time in modern physiotherapy, we are seeing the emergence of a condition that cuts across all areas of practice.  

Long Covid is sometimes called Post Covid syndrome. The term Long Covid is that preferred by the community of people who live with this condition, and we adopt the same terminology.

Signs and symptoms of Long Covid

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. 

They include, but are not limited to:

  • fatigue
  • breathlessness
  • chronic cough
  • dysautonomia
  • musculoskeletal pain
  • headache
  • gastrointestinal dysfunction
  • neurological symptoms
  • skin disturbances
  • loss of smell and taste

Download our Long Covid graphic for more information on the signs and symptoms

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. It's been easier to handle since then.

Senior physiotherapist currently living with Long Covid.


Frequently asked questions on Long Covid diagnosis

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.

Who is affected by 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

  • 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.

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

  • 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.

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.

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

  • 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

(View the video transcript)

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.

Long Covid rehabilitation

(View the video transcript)

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.

Useful links and references

Guidelines

Reviews  

Useful websites  

Podcasts  

Acknowledgments

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

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

References 

 

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