The British Medical Journal published 14 October 2020 looked into this. They reviewed the National Institute for Health research paper published on 15 October 2020.
COVID-19 was declared a pandemic by the World Health Organisation in March 2020. It has had far reaching effects on people’s lives, healthcare systems and the wider society.
However, as yet, there is little research into the number of people at risk of developing ongoing COVID-19, so called LONG COVID.
Early attention has been on the acute illness generated by the virus, but it is becoming clear that, for some people, COVID-19 infection is a long term illness. The National Institute for Health Research said there was limited and incomplete evidence on the long term effects of COVID-19.
However, it is becoming increasingly clear that, for some people, COVID-19 infection is not a discrete episode but one that marks the start of ongoing and often debilitating symptoms. It could be related to their rehabilitation following a hospital admission, but others are reporting life changing experiences that follow an initial infection that they managed at home, with symptoms becoming more severe over time.
There is as yet no formal diagnostic term for these ongoing effects, nor services to support them. People experiencing similar symptoms call it LONG COVID but it is unclear if all of the people are suffering from the same phenomenon.
Many researchers and healthcare professionals are therefore cautious about attributing all the reported problems to a single diagnosis.
In the light of this concern, The Institute of Health Research opted to use the phrases ongoing COVID-19 or living with COVID-19 until evidence can support either one or more specific diagnostic definitions.
The British Medical Journal suggests that people experiencing long term effects of COVID-19 may have different syndromes, such as post intensive care syndrome, post viral fatigue syndrome and long term COVID syndrome.
How many people live with ongoing COVID-19?
An unreferenced but frequently cited estimate is that most people recover from mild infections within two weeks and more serious disease within three weeks. However, a number of small surveys are reporting remarkably similar findings which challenge that assumption.
A team from Italy, one of the earliest affected countries, reported that 87% of people discharged from a Rome Hospital were still experiencing at least one symptom 60 days after the onset of COVID-19 and 55% had three or more symptoms including fatigue 53%, difficulty in breathing 43%, joint pain 27%, and chest pain 22%, with 40% saying that it reduced the quality of their life.
NHS England estimated that more than 95,000 patients have been admitted to hospitals across England with COVID-19 and it is assumed that 45% would need ongoing support. Some estimates have suggested that up to 50% of people hospitalised would need formal rehabilitation services.
Public Health England published guidance on 7 September 2020 that stated around 10% of mild COVID-19 cases who are not admitted to hospital have reported symptoms lasting more than four weeks and a number of hospitalised cases reported continuing symptoms for eight or more weeks following discharge.
What are the symptoms?
Whilst the range of symptoms and their relative frequency is not fully documented, it is clear that COVID-19 can affect not only the respiratory system, but also the heart and cardiovascular system, the brain directly (encephalitis) and indirectly (e.g. secondary to low levels of oxygen or blood clots), the kidneys and the gut.
In August 2020, a NICE rapid review reported that acute myocardial injury was the most commonly described cardiovascular complication in COVID-19, occurring in 8 to 12% of all those discharged with heart failure and arrhythmia.
Ongoing problems with the liver and skin have also been reported.
What are the symptoms?
- Hair loss.
- Cognitive difficulties.
- Continuing headaches.
- Lymph node enlargement.
- Long term loss or change of smell and taste.
- Ongoing respiratory problems.
- Ongoing cardiovascular symptoms and disease including chest tightness, acute myocarditis and heart failure,
- Liver and kidney dysfunction.
- Gastrointestinal disturbance with diarrhoea.
- Inflammatory disorders, myalgia, multisystem inflammatory syndrome, Guillain Barre syndrome, neuralgic amyotrophy.
- Clotting disorders and thrombosis.
- Skin rashes.
As yet there is no diagnostic code for LONG COVID, meaning this experience is not captured in routine clinical data sets. So called LONG COVID is a term widely used on social media but is not a well-defined term and not a diagnosis used widely by clinical staff.
This lack of empirical diagnostic tests may mean that a number of different conditions may be falling under a single umbrella term.
It is clear that the symptoms described may be due to a number of different syndromes, intensive care syndrome, post-viral fatigue syndrome, permanent organ damage and long term COVID syndrome. Patients may be suffering with one but having no formal diagnosis has consequences – the psychological impact of not having a formal COVID-19 diagnosis can inhibit patients from engaging with their rehabilitation programme.
Clearly at the beginning of the pandemic, symptomatic patients were unable to get tested and are left in limbo without a positive test but passed the stage at which they would test positive. For patients who were not admitted to hospital there is no actual clinical data and these patients are reliant on the medical profession believing their history of the disease.
Why are Some People Affected?
It is not known why some people’s recovery is prolonged. Persistent viremia due to weak or absent antibody response, relapse or reinfection, inflammatory and other immune reactions, deconditioning and mental factors such as posttraumatic stress may all contribute. Long term respiratory, musculoskeletal and neuropsychiatric sequelae have been described with other coronaviruses such as SARS and MERS and these have pathophysiological parallels with post-acute COVID.
Professor Donald O’Donoghue, Registrar of the Royal College of Physicians and a renal specialist said for those patients who ware in hospital on a ventilator, there is a risk their lungs do not fully recover and they may have some level of interstitial lung disease which causes fibrosis – scarring.
The brain can prevent oxygen flowing, so people may develop breathlessness over the months during normal activities with some who get ongoing scarring having severe breathing issues he added. Kidney damage is also a concern with nearly 40% of COVID patients in intensive care units needing dialysis, because not enough oxygen has been able to get to their kidneys due to inflammation.
Even though the kidney will likely repair, patients can be left with scarring that can progress – and there will be no symptoms until it is really damaged quite badly.
What Tests Could Be Considered to Help Diagnosis?
Blood tests should be ordered selectively and for specific clinical indications following the careful history and examination.
Anaemia should be excluded in a breathless patient. Lymphopaenia is often a feature of severe acute COVID-19. Elevated biomarkers may include C-reactive protein, for example, acute infection, white cell count infection or inflammatory response, beta natriuretic peptide for example in heart failure, ferritin for inflammation and continuing prothrombotic state, troponin for acute coronary syndrome or myocarditis and a D-dimer for thromboembolic disease.
Troponin and D-dimer tests can be falsely positive, but a negative result can reduce clinical uncertainty.
For patients who were not admitted to intensive care, the British Thoracic Society guidance on follow up for COVID-19 patients who had a significant respiratory illness proposes community follow up with a chest X-ray at 12 weeks and referral for any new, persistent or progressive symptoms. For patients with evidence of lung damage then referral to a respiratory physician is mandatory and a subsequent early referral can aid pulmonary rehabilitation and recovery.
How is a Patient Supported and Helped to Recover from COVID-19?
Serious ongoing complications or comorbidities need to be excluded but following this, patients should be managed pragmatically and symptomatically with the emphasis on holistic support while avoiding over investigation.
Cough can be managed with simple breathing control exercises and medications such as proton pump inhibitors if reflux is also occurring.
Breathlessness – This tends to improve with breathing exercises, but pulse oximeters are helpful for assessing and monitoring respiratory symptoms post COVID-19. Survivors of COVID-19 acute respiratory DRESS syndrome are at risk of long term impairment of lung function. Serious interstitial lung disease appears to be rare in patients who were not hypoxic, though data on long term outcomes is not yet available.
Pulmonary rehabilitation – Many patients are still recovering spontaneously in the first six weeks after acute COVID-19 and do not generally require a fast track entry into a pulmonary rehabilitation programme. However, those who had significant respiratory illness may benefit. This includes exercise training, education, and behavioural modification designed to improve the physical and psychological conditions of patients with respiratory disease.
Fatigue – The profound and prolonged nature of fatigue in some post acute COVID-19 patients shares features similar with chronic fatigue syndrome described after serious infections such as SARS, MERS and community-acquired pneumonia. There does not appear to be any published research evidence on the efficacy of either pharmacological or non-pharmacological interventions on fatigue after COVID-19.
Patient resources on fatigue management and guidance to conditions on return to exercise and graded return to performance for athletes in COVID-19 are currently all based on indirect evidence.
This lack of evidence led to the British Medical Association suggesting that exercise in such patients should be undertaken cautiously and cut back if the patient develops fever, breathlessness, severe fatigue or muscle aches.
Cardiopulmonary Complications Assessment and Management
Possibly 20% of patients admitted with COVID-19 has clinically significant cardiac involvement. These can include myocarditis, pericarditis, myocardial infarction, dysrhythmias and pulmonary emboli. They can present several weeks after acute COVID-19 and are common in patients with pre-existing cardiovascular disease but they have also been described in young previously active patients.
The pathophysiological mechanisms suggested include viral infiltration, inflammation, and micro-thrombi and down regulation of ACE2 receptors.
Chest Pain – This is common in post acute COVID-19 and it is important to differentiate musculoskeletal and other non-specific chest pains and serious cardiovascular conditions. Careful history, examination and investigations which can include echocardiogram, CT of the chest and MRI imaging.
Thromboembolism – COVID-19 is an inflammatory and hypercoagulable state with an increased risk of thromboembolic events. Many of the hospitalised patients receive prophylactic anticoagulation. However, recommendations for anticoagulation after discharge vary, but higher risk patients are typically discharged from hospital with 10 days of extended thromboprophylaxis.
If a patient has been diagnosed with a thrombotic episode, anticoagulation, further investigation and monitoring is required. However, it is not known how long the patients can remain hypercoagulable following acute COVID-19.
Ventricular Dysfunction – Left ventricular systolic dysfunction and heart failure after COVID-19 can be managed according to usual guidelines. Intensive cardiovascular exercise must be avoided for three months in all patients after myocarditis or pericarditis; athletes are advised to take three to six months of complete rest from cardiovascular training followed up by a specialist with return to sport guided by functional status, biomarkers, absence of dysrhythmias and evidence of a normal left ventricular systolic function.
Ischaemic stroke, seizures, encephalitis, and cranial neuropathies have been described after COVID-19 but these all seem to be rare. Patients need to be assessed by a neurologist and common nonspecific neurological symptoms, which seem to occur with fatigue and breathlessness, include headaches, dizziness and cognitive blunting known as brain fog.
COVID-19 tends to affect older patients more severely and those who fortunately survive are at a high risk of sarcopenia, malnutrition, depression and delirium. Post COVID-19 chronic pain may affect patients of any age but seems to be common in older patients. Physical symptoms add to the psychosocial impact of disrupted access to healthcare, core personal routines, social interactions and support needs to be personalised with input from a multi professional team.
Mental Health and Wellbeing
Anxiety, stress and conditions related to broken routines, loneliness and social isolation in uninfected individuals have been emphasised by individual reactions to the pandemic. Lay accounts suggest that post-acute COVID-19 is often associated with low mood, hopelessness, heightened anxiety and difficulty sleeping. Posttraumatic stress disorder may occur, especially in healthcare workers and those with caring responsibilities.
This is strongly associated with social determinants such as poverty, discrimination, social exclusion. Mental health and wellbeing are enhanced by increased social solidarity, informal social support, mutual aid and other community based and collective measures.
Social and Cultural Considerations
COVID-19 is more common and has a worse prognosis in the acute phase in people who are poor, elderly and from certain minority ethnic groups. It is too early to say whether the sociodemographic patterns persist in post acute COVID-19.
Acute COVID-19 patients appear to be from diverse social and cultural backgrounds, many having comorbidities including diabetes, hypertension, kidney disease, or ischaemic heart disease. Some have experienced family bereavements as well as job losses and the consequential financial stress and food poverty. A joined up holistic approach needs to be taken to help rehabilitate those patients who are suffering with LONG COVID.
A quick access acute rehabilitation programme could provide very early intervention opportunity for further triage into post acute pathways in the network tree. The majority of patients are on a fairly fast recovery track; their needs may be met by the local rehabilitation services but these require significant expansion to enable patients to access them in a timely manner.
A small number of patients will have more complex rehabilitation needs on a slower trajectory towards recovery. They require specialist rehabilitation and often for longer periods.
The London General Practice is reviewing all aspects of patients suffering symptoms post COVID-19 infection and is preparing pathways to support patients with their care and rehabilitation.
Dr Paul Ettlinger
The London General Practice