This Guidelines summary of Recommendations for the recognition, diagnosis, and management of long COVID: a Delphi study covers key recommendations to provide a rapid expert guide for GPs and clinical services in the recognition, diagnosis, and management of post-COVID-19 syndrome, also known as long COVID.
The Delphi method was used to derive 35 clear and practical recommendations by UK clinicians with an interest in and lived experience of long COVID.
For further information, refer to the full guideline.
- COVID-19 is a new condition with increasing evidence of serious long-term sequelae, including cardiac, respiratory, and renal disease, new-onset diabetes, and excess deaths reported
- It cannot, therefore, be assumed that patients are suffering from self-limiting postviral fatigue and that rehabilitation is sufficient. However, input from expert physiotherapists and occupational therapists who are familiar with the condition is an important aspect of caring for patients with long COVID
- Patients require a holistic clinical approach that prioritises investigation of potential physical pathology
- The lead clinician should be a doctor, ‘well versed in multisystem disorders’, working across disciplines, and who is able to refer patients to specialists.
|Box 1: Known Examples of Conditions Associated With Long COVID|
- Long COVID is not a primary mental health problem, but mental health specialists such as neuropsychiatrists can offer a supporting role to the multidisciplinary team. Psychological aspects of disease should be managed as part of the recovery process, but not seen as the primary treatment focus
- No discrimination should exist in the treatment of patients with pre-existing mental health difficulties with regard to equal access to care for their long COVID and appropriate investigations for organ damage
- Regarding children, a consultant paediatrician should lead the service. NICE guidelines recommend considering referral from 4 weeks for specialist advice for children with ongoing symptomatic COVID- 19 or long COVID.
|Box 2: Recommendations Relating to Clinic Organisation|
Diagnosis of Underlying Disorders
- At present, there is a considerable risk to patient safety if appropriate investigation of common symptoms of long COVID (such as chest pain, breathlessness, palpitations, abdominal pain, or fatigue) that have wide differential diagnoses is not undertaken
- Serious conditions, related to SARS-CoV-2 infection or not, must be adequately excluded, and investigations should be appropriately guided by the history.
- Long COVID-specific examination (for example, the NASA Lean Test for postural tachycardia syndrome [PoTS]) or tests such as electrocardiogram (ECG) are best conducted in person, and chest X-ray (CXR) may be appropriate
- CXR may exclude relevant pathology such as tuberculosis, but is less relevant in investigating cardiac, pulmonary vascular, or autonomic causes for breathlessness where computed tomography or ventilation/perfusion scans are more likely to be indicated
- Spirometry with beta-agonist reversibility could be used to diagnose airway hyperreactivity
- Studies on venous thromboembolic disease are limited to patients with acute COVID-19, severe disease, or based on expert opinion, but are an important diagnosis to consider
- Oxygen desaturation on exertion occurs in both acute and long COVID, and should form part of the baseline assessment. The only thresholds for defining levels of concern for hypoxaemia and desaturation with exercise related to acute COVID-19, and no agreed thresholds are available in long COVID
- Assessments such as 1-minute sit-to-stand tests and 6-minute walk tests do or should form part of the assessment in community or specialist clinics. The exertional test chosen should take account of any pre-COVID-19 limitations, and should include heart rate, as this may help to assess autonomic function.
- Referral for more detailed assessment is required in the following scenarios:
- desaturation with or without overt/reported dyspnoea
- nocturnal desaturation
- extreme fatigue
- behavioural change in those who struggle with verbal communication
- patient reports significant post-exercise malaise after such testing (lasting beyond the next day)
- severe tachycardia
- postural blood pressure drop.
- There is increasing evidence of cardiovascular complications with COVID-19. Patients with long COVID (of all ages) have been diagnosed with arrhythmias, autonomic dysfunction, myocarditis, pericarditis, and microvascular ischaemia
- Autonomic dysfunction, especially manifesting as PoTS, occurs commonly post COVID-19. There is a need to consider a differential for tachycardia and palpitations that, in long COVID, includes pulmonary embolus, cardiac, and respiratory causes. Autonomic dysfunction should also be suspected in patients with light-headedness, chest pain, and nausea, and the association of autonomic dysfunction with mast cell disorders considered.
- Neurocognitive testing is a particularly scarce resource, and neurology review and brain MRI may be more helpful early in the illness. The benefits of testing would support the need for rehabilitation from occupational therapy or a neuropsychologist
- NICE guidelines on long COVID advise considering neuropsychometric testing after 6 months if no improvement/worsening of cognitive function, as many will resolve
- Clinicians should include long COVID in a differential diagnosis of arthritis once other known autoimmune causes have been excluded.
|Box 3: Recommendations Relating to Diagnosis of Underlying Disorders|
- Long COVID, like all long-term conditions, has an impact on many aspects of life and is best managed holistically with physical, psychological, and social factors addressed. Prolonged illness following SARS-CoV-2 infection is characterised by the development of new symptoms at different timepoints. Clinicians need to provide patient ‘safety-netting’ advice and guidance on expected patterns of illness
- The experience of many patients is of post-exertional symptom relapse. Physical or cognitive workload beyond the patient’s ‘energy envelope’ may cause an exacerbation of symptoms including fatigue, fever, myalgia, and breathlessness
- Exacerbations may manifest immediately or after a delay of 24–48 hours and may last days or months. As the threshold for this effect varies not only by patient but over time, pacing needs to be flexible and careful
- Doctors play a key role in supporting patients through the complexity of specialist investigations and differential diagnoses, and considering symptomatic treatments
- Patients should be made aware of research studies: participation could add meaning to what is often a very negative experience.
- Occupational health service referrals and medical reports supporting the return-to-work process are needed
- The relapsing–remitting nature of the illness needs to be emphasised, as employer pressure may result in patients returning to work too soon. The onus is on the doctor with current clinical responsibility for the patient to complete the fit note
- The content of the fit note should be agreed upon between the patient and doctor, including a ‘medically-recognised diagnosis’. For NHS staff to receive ‘COVID pay’ during absence, the fit note must mention COVID
- The ability to return to work after illness is a marker of recovery and clinicians must, therefore, record work status in the clinical notes in situations of chronic ill health
- From a public health perspective, counting days lost to sickness and lost income on account of long COVID is essential.
|Box 4: Recommendations Relating to Management: General Approach|
Management: Specific Conditions
- Ongoing exertional chest pain may warrant referral to a rapid access chest pain clinic and/or cardiac magnetic resonance imaging
- In patients diagnosed with myocarditis, exercise to 60% maximum heart rate can be advised, but patients need to work out their own limits, which may be lower than this. In some cases of myocarditis or pericarditis, there is a difficulty in managing tachycardia, and pharmacological approaches are needed, such as beta-blockers or ivabradine. As colchicine and antianginals may also be helpful, advice from a long COVID assessment clinic needs to be sought
- PoTS (and other dysautonomic symptoms such as breathlessness, orthostatic intolerance, dizziness, and tremor) is an unfamiliar diagnosis for many clinicians, but seems to affect a significant subgroup of patients with long COVID
- PoTS treatment can start with fluids, compression, and lifestyle adaptations (for which specific patient support materials are available), but may need to escalate to medication if symptoms are not improved. Midodrine may be helpful, although this is only available following secondary care initiating the prescription in many parts of the UK
- Similarly to treating urticaria, mast cell features require two- to four-fold larger doses of antihistamines to suppress them. Dermatologists and GPs with an interest in mast cell disorders have experience in counselling patients about such off-label use, and an individual therapeutic trial is simple to arrange
- Some patients exhibit sensitivity to histamine-rich foods and prominent gastrointestinal symptoms (bloating, cramping pain, diarrhoea, acid reflux). These, and other known triggers of mast cell activation, should be avoided; the aim is to switch off the immune overreaction
- The term ‘breathing pattern disorder’ was used in the original guidance to describe the subjective experience of patients that is not ‘breathlessness’ in the strict sense of the word. Its aetiology is unknown but may represent a disorder of central breathing control. Meditation/mindfulness is promoted in the NHS as an effective therapy for anxiety and the sensation of breathlessness
- Having a mental health disorder should not preclude investigation of any organic disease, and unexplained symptoms, signs, and neuropsychiatric features should always prompt exclusion of organic pathology in the first place. Addressing epistemic injustice issues in the investigation and management of long COVID should be a priority for local services
- Patients with long COVID commonly refer to taking ‘the stack’ or ‘the supplement stack’, which includes high-dose vitamin C and D, niacin (nicotinic acid), quercetin, zinc, selenium, and sometimes also magnesium. Examples of noteworthy interactions with supplements include: niacin causing an increased risk of bleeding events when combined with selective serotonin reuptake inhibitors or nonsteroidal anti-inflammatory drugs, increased risk of rhabdomyolysis together with statins, and quercetin causing inhibition and induction of various human cytochrome P450 enzymes.
Box 5: Recommendations Relating to Management: Specific Conditions