We have learned a lot about Long COVID and its effects over the past year. In our latest blog, Dr Tom Fardon, Consultant Physician of Respiratory Medicine at NHS Tayside, outlines his own experience with COVID-19 and explains the steps he takes to diagnose and treat patients who may be experiencing long-term effects from the syndrome.
COVID-19 is an unusual illness. The range of symptoms is broad, much more so than the original case definition of early 2020 that included only breathlessness, persistent cough, and fever. The range of severity of illness is equally as wide: some people suffer only mild symptoms of an upper respiratory tract infection; some have no symptoms at all; some develop a rapidly progressive pneumonitis requiring ventilatory support – in wave 1 of the pandemic 20% of people who were admitted to hospital with COVID-19 did not survive.
The unprecedented collaboration between scientists, clinicians, and pharma companies around the world has led to the discovery of a small number of treatments that can, and do, improve outcomes. But, most importantly, we now have safe and effective vaccines that protect against infection, reduce severity of disease, prevent admissions to strained NHS services, and reduce mortality.
The new ‘normal’
For most people COVID-19 affects two weeks of their lives, with a range of flu-like symptoms that are unpleasant, but don’t lead to hospital admission, and they will recover. Most people will take a few weeks to recover their fitness, get back to their normal level of activity, and feel “normal” again. People always ask: “How long until I get back to normal?” Everyone is different. Depending on your previous baseline, the severity of your illness, the length of time laid up resting, and your expectations of recovery, it can be a week, two, perhaps six.
For some people, recovery from the acute illness is only the start of the journey. What we have now come to term Long COVID affects somewhere between 5% and 20% of people who have had the COVID-19 infection. The severity of disease does not seem to predict progression to Long COVID. Indeed most of our critical care COVID-19 survivors have not gone on to develop Long COVID, though their rehabilitation has been long, simply due to the severity of their illness.
Offering a service to people with long lasting symptoms following COVID-19 infection is very challenging. Long COVID is a syndrome for which there is no clear clinical definition; no diagnostic test; large overlap with other diseases and syndromes, some of which are ‘diagnoses of exclusion’; and no mechanistic or pathophysiological pathway. Most hospitals do not have an existing team dedicated to the holistic care of people presenting with the symptoms of Long COVID. The symptoms cross speciality borders: cardiology, respiratory medicine, neurology, rheumatology, dermatology, endocrinology.
In NHS Tayside we followed up our patients from COVID-19 critical care areas after wave 1, and we’ve seen a range of people in our outpatient clinics with Long-COVID symptoms. My experience of seeing people with protracted symptoms following COVID-19 infection has shown me a few emerging patterns.
Speaking to people who have protracted symptoms following COVID-19, there are commonalities in their concerns: is this Long COVID? will it get better? how long will these symptoms last? is there anything I can do to get better? will it get worse? and is this how it’s going to be forever?
Steps to diagnosis
Our first step is to rule out other causes of those symptoms. If someone is breathless following COVID-19, have they developed asthma? If someone has chest pain, is their ECG normal? Just because symptoms started after COVID-19 doesn’t always mean that COVID-19 is responsible. A detailed history often reveals mild symptoms prior to COVID-19, and new things can happen at any time.
Step 2 is to look for modifiable causes of symptoms – deconditioning and weight gain are very often implicated, so a gradual return to an exercise programme, with planned weight loss can be very effective. Addressing any psychological issues is also critical.
Holistic care is vital. There is no clear answer to most of the concerns these people have. We simply don’t understand enough about the Long COVID syndrome to give reliable information about the outlook. In my experience it is uncertainty that scares us: once we’re given the diagnosis, the prognosis, the clear plan, we then have a target, something to aim for, a route to take, and a team to support us.
For people with Long COVID we work in an area of extreme uncertainty. Development of multi-disciplinary teams to help people with this wide range of symptoms, and causes has to be a priority for the next 2 to 5 years.
In NHS Tayside the COVID-19 Assessment Rehabilitation Enablement and Support (CARES) service consists of highly specialised physiotherapists, occupational therapists, psychologists, and secondary care consultants, like me. Our approach is to ensure early screening to look for serious conditions known to complicate COVID-19, such as pulmonary embolus, atrial fibrillation, pericarditis; followed by a personalised patient-centred care plan delivered by the team; and early referral to secondary care if there are concerns over developing complications.
My own experience with Long COVID
I had COVID-19 in April 2020, just before I should have been running the Boston Marathon. I had a dramatic loss in fitness over the 2 weeks of illness, and suffered for over 12 months with daily headaches, earache, tinnitus, sore throat, dizziness. Those symptoms have, with time, settled. I have no explanation for why they happened, why they went away, and even whether they were definitely related to my COVID-19 infection. They certainly created a high level of uncertainty for me and my family, adding to what was already a stressful 2020. But it has helped me to have first-hand experience of the uncertainty that people can experience.
Hope for the future
As we approach 18 months of the pandemic we see more people who do recover and return to normality, but as the restrictions are relaxed and infection rates reach dizzying heights across the country, we will undoubtedly see more people with symptoms of Long COVID. It is therefore vitally important that we have clear guidance on the approach to people who present with symptoms suggestive of Long COVID. As the national guideline continues to develop, it will be a vital place for clinicians and the public to look for reassurance and guidance. Most importantly, it’s important that we don’t miss newly presenting illnesses, and equally important we don’t ignore or downplay the symptoms that people are now presenting with. As we wait for more studies that help us to diagnose and treat, this approach will be crucial.
Dr Tom Fardon is a Consultant Physician in Respiratory Medicine at Ninewells Hospital and Honorary Reader in the University of Dundee