Long Covid can affect anyone who has had the acute form of the illness. Here we explain what Long Covid is, and how best to approach treatment for patients living with it.
What is Long Covid?
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.
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. The symptoms associated with Long Covid are many and varied. They include, but are not limited to:
- musculoskeletal pain
- gastrointestinal dysfunction
- neurological symptoms
- skin disturbances
- loss of smell and taste
Frequently asked questions
What is the Let’s Talk Long Covid network?
Our Let’s Talk Long Covid physiotherapy network comprises physiotherapists working with people experiencing Long Covid through either specialist clinics (England) or existing physiotherapists across all sectors.
A central component of our group is the community voice. The lived experiences of those physiotherapists living with Long Covid are critical to developing our messaging and our collective understanding of practice in this new area.
What constitutes good rehabilitation for people with Long Covid?
Before entering into a complex and convoluted assessment, it is important to establish whether the person living with Long Covid has been screened for cardiac damage. Good multidisciplinary team (MDT) communication is essential to establish this.
Before progressing to full assessment of all symptoms, we advocate screening for Post Exertional Symptom Exacerbation (PESE) or Post Exertional Malaise (PEM) (see next FAQ for more details).
Early intervention for people living with Long Covid should be aimed at stabilising symptoms and carefully establishing the individual’s baseline. It is unhelpful to advise people to push through fatigue as this can lead to setbacks and for some groups can be incredibly dangerous for recovery. We recommend using activity diaries to establish stability in symptoms before engaging in increasing levels of physical activity.
Physiotherapists must adopt a personalised approach to rehabilitation. Individualised assessment and support are the cornerstones of this rehabilitation intervention. Good assessment will be patient led and is contingent on good data. We recommend using a screening tool such as the C19-YRS to guide questioning and more detailed assessment only when indicated.
It’s important to be mindful that assessments, questionnaires and outcome measures create a burden on the person completing them. As two highly prevalent symptoms of Long Covid are brain fog and fatigue, it’s important not to overload people at the point of assessment as this could result in a setback.
What is post exertional malaise (PEM)/post exertional symptom exacerbation (PESE)?
Often after Covid-19 illness a person may feel weaker, especially if they stayed in bed while getting over the acute infection. Fatigue is a very typical response to a viral infection such as Covid-19. For many people, this will get better on its own as they recover from the acute infection. However, a sub-group of people living with Long Covid may go on to develop post exertional malaise (PEM) or post exertional syndrome exacerbation (PESE).
PEM is an overwhelming fatigue. It is more than feeling tired or sore after activity. PESE refers to a significant worsening of any of the individual's symptoms. Triggers and symptoms vary from person to person. PEM/PESE are cardinal signs of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and therefore careful attention should be given to screening.
PEM/PESE is neatly summarised as an atypical, excessive and disproportionate response to physical, cognitive or emotional exertion which:
- escalates of some or all of a person’s symptoms
- occurs immediately or up to one to three days after the triggering activity
- results in a significant loss of functional capacity
is not made better with a good night’s sleep and the level of symptom exacerbation seems disproportionate to the trigger(s).
Recovery from a PEM / PESE crash is complex and unpredictable. Recovery can take time, from days to months. Rest is very important.
As physiotherapists we have a duty to support the individual to try and avoid PEM/PESE by identifying and tracking their triggers. Planning, prioritising and pacing activities of daily living can prevent a PEM/PESE crash from happening by encouraging people experiencing PEM/PESE to work within their energy limits.