COVID-19: Long covid (Guidelines)

Whilst long covid is a new condition, assessment and management of symptoms is not new and should be familiar to those working in primary care. Assess as you would normally for any other patient.

In the context of long covid patients, the clinical presentation extends beyond mere tiredness. Patients commonly present with a spectrum of symptoms, including but not limited to fatigue, breathlessness, myalgia, arthralgia, and insomnia. It is imperative that each symptom receives thorough investigation, consistent with routine practice.

This guideline builds upon the NICE CKS: How should I assess an adult with tiredness / fatigue 2021

Long covid is a diagnosis of exclusion

• It is vital that other conditions are excluded prior to making a positive diagnosis of long covid.
• A deterioration in a long-term condition is red flag and should not be attributed to long covid without thorough assessment.
• Common alternative diagnoses seen in long covid clinics are ischaemic heart disease, arrhythmias, COPD, anaemia. More unusual diagnoses include obstructive sleep apnoea, destructive arthropathies, Addison's disease and myasthenia gravis.
• Because it is a diagnosis by exclusion, it is unreasonable to expect primary care colleagues who have not had the length and breadth of training as a GP to make a positive diagnosis without any GP input in such complex cases.

Consider long covid

• In your differential diagnosis of fatigue.
• Whilst most patients have (correctly or incorrectly) diagnosed themselves with long covid at presentation, there are an increasing proportion of patients who present with fatigue or other symptoms in whom we should remember to consider long covid as a possible cause.

Postural tachycardia syndrome (PoTS)

• This very common in long covid. It is useful to consider this when taking a history.
• Whilst the history remains the most important part of the assessment of PoTS, some GPs may wish to carry out a NASA Lean Test. This is not obligatory, please refer to your local Long Covid Service for guidance.
• Symptoms can be alleviated by non-pharmacological measures, which can be started in primary care; and pharmacological measures, which are usually started by clinicians with a special interest in long covid.
• Please refer to PoTS pathway for further information.

History

• Elicit and validate the patient’s narrative and experiences
• Assess mental health with a particular focus on mood and anxiety levels
• Consider menopausal symptoms, sleep and daytime somnolence, symptoms of postural orthostatic tachycardia syndrome (POTS). Explore drug and alcohol consumption. Enquire about post-exertional symptom exacerbation (PESE)
• Understand the impact on the patient’s ability to carry out their everyday activities, both paid and unpaid
• Use Epworth Sleepiness Scale to rule out obstructive sleep apnoea

Clinical examination

• Perform a comprehensive physical and mental health evaluation based on the patient’s history and presenting symptoms.
• Record: pulse, respiratory rate, BMI, BP, O₂ sats

Codes for EMIS and Vision:

• Post COVID-19 Syndrome: AyuJC
• Search keywords: POSTCOVID POSTCOVIDSYN

Investigation:

• Standard tests
• FBC, U+E, LFT, CRP, TSH, HbA1c, ferritin, folate, coeliac screen
• Vitamin B12
• HIV, HBV, HCV, Syphilis
• Lyme serology (all of NHS Highland and other risk areas)
• Urine Dip
• ECG
• Vitamin D: See notes under management below.
  • For those long covid patients who remain symptomatic, they should be tested in accordance with NHS Highland Vitamin D guidelines.
  • Please note that the prevalence of pain, myalgia and proximal muscle weakness in long covid patients is high.
  • Subsequent prescription adjustments of Vitamin D and Calcium should be made as necessary.

Additional tests:

• If over 60: Ca⁺, ESR, myeloma screen
• If breathless: CXR, ProBNP, pulmonary function tests
• If has muscle pain: CK
• If has persistent polyarthropathy: ESR, ANA< RhF, aCCP, immunoglobulins
• If has low Na+ or low BP: early morning cortisol

When other illnesses have been excluded, and it is appropriate to do so, make a positive diagnosis of long covid.

Vitamin D

• Prescribe 400 units (10 micrograms) of Vitamin D supplementation to all long covid patients between September and March.
• For individuals deemed at high risk of Vitamin D deficiency - such as those who are frail, housebound, or have darker skin tones - this supplementation should continue year-round.
• Additionally, as above, under investigations, long covid patients who remain symptomatic should be tested in accordance with NHS Highland Vitamin D guidelines.
• Please note that the prevalence of pain, myalgia and proximal muscle weakness in long covid patients is high.
• Subsequent prescription adjustments of Vitamin D and Calcium should be made as necessary.

General considerations

• Manage individual symptoms as you would normally
• Refer to specialists as you would normally
• Refer to NHS Long Covid Service and third sector
• Offer continued support to patient 
• Encourage to keep a symptom diary. Signpost to NHS Inform

Specific considerations

• For more detailed advice on management of symptoms, refer to the Implementation Support Note that accompanies SIGN 161: Managing the long-term effects of COVID-19. 
• Symptoms of Postural orthostatic tachycardia syndrome (PoTS) are very common. Please refer to the PoTS pathway for further information.

To enable all patients access to this, we have developed a home testing protocol: 

• Instructions on how to carry out a NASA lean test (pdf, November 2023).