Long COVID

Overview

Long COVID (Post COVID Syndrome) is a multi-system condition with a range of debilitating symptoms. Signs and symptoms continue or develop after acute COVID 19 infection, continue for more than 4 weeks and are not explained by an alternative diagnosis.

It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post COVID-19 syndrome (12 weeks or more). Most people who have a COVID-19 infection will recover over a few weeks, however, some people go on to develop Long Covid.  

Long COVID is a new condition that is still being studied. It is recognised that Long COVID affects multiple systems (including inflammatory, autonomic, and cardiovascular). It is unlikely to have a single cause. There is currently no specific cure or treatment for Long COVID, care and support is focused on:

• Identifying and addressing “treatable traits”
• Understanding symptoms, self-management and adjustment
• Rehabilitation including supporting return to work (where appropriate)

Prevalence: (Updated March 23)

Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK - Office for National Statistics (ons.gov.uk)

Long Covid in Children:

Long COVID can affect people of any age, but it can present differently in children than adults. Please see separate page for Long COVID in children (Remedy BNSSG ICB)

Symptoms

Symptoms of long COVID include, but are not limited to:

• Fatigue- including post exertion malaise (PEM) or Post exertion symptom exacerbation (PESE)
• Dyspnoea and cough
• Impaired memory and concentration “brain fog”
• Palpitations
• Chest pain/tightness
• Dizziness
• Myalgia and arthralgia
• Anosmia
• Insomnia
• Tinnitus
• Gastrointestinal symptoms including diarrhoea, nausea and bloating
• Recurrent coryzal symptoms
• Headaches
• Rash

Each person with Long Covid will have a different combination of symptoms that may change over time. The symptoms can be constant or can relapse and remit.

Primary care assessment and management

During the initial weeks following COVID 19 infection it is important to be vigilant for signs of acute deterioration that require more urgent medical care. Please see the Acute Assessment page 

Patients with persistent symptoms after 12 weeks are less likely to have an acute deterioration related to COVID-19 infection. It is still important to be vigilant and investigate other causes of symptoms that may not be related to COVID-19. Do not assume that ongoing symptoms are all due to COVID-19 and keep an open mind about other diagnoses.

Consider the following investigations in patients who continue to have symptoms:

Blood tests to include:

• FBC, TSH, HbA1c, U&E, LFT, CRP, TTG antibodies, Calcium, creatinine kinase (these tests are mandatory prior to referral to Long COVID clinic and are also listed on the Long COVID profile on ICE)

Do NOT request a blood test for SARS-COV-2 antibodies, it is unlikely to be helpful because a negative result does not rule out previous infection with SARS-COV-2, and is not required prior to referral to the Long COVID clinic.

Also consider if symptoms indicate:

• Pulse oximetry - at rest. Also consider sit/stand test to check for desaturation.
• Chest Xray - if there are persisting respiratory symptoms.
• D-dimer - only if acute pulmonary embolismis suspected. (blanket testing of all patients is not advised).
• Spirometry or relaxed FVC  (FVC < 80% predicted indicative of restriction).
• ECG - if there are cardiac symptoms or in patients who remain breathless.
• NT-proBNP - in patients with suspected heart failure and who are eligible - see NT-proBNP page.
• Echocardiogram - if NT-proBNP is raised*.
• (*If BNP slightly raised and normal ECHO then investigate for respiratory causes (mild elevation in BNP is non-specific and can be elevated for all sorts of reasons e.g. renal impairment etc)

Guidance:

• Investigation of persistent unexplained respiratory symptoms in context of recent illness consistent with COVID infection covid-community-follow-up-revised-june-2021.pptx
• BNSSG Primary Care Assessment and Management of Adults with Persistent Symptoms Following COVID-like Illness
• Information on management of inappropriate tachycardia following COVID-19 is available here PoTS page.

Red Flags

Consider other causes of symptoms and if suspected, investigate and refer as appropriate:

• Suicidal Thoughts (Remedy BNSSG ICB)
• Lung - 2WW (Remedy BNSSG ICB)
• Heart Failure (Remedy BNSSG ICB)
• Rapid Access Chest Pain Clinics (Remedy BNSSG ICB)
• Upper GI - USC (2WW) (Remedy BNSSG ICB)
• Lower GI - USC (2WW) (Remedy BNSSG ICB)

Self-management resources

The “Your Covid recovery” site has been taken down.

Once other concerning medical conditions have been ruled out or adequately managed, Patients should be signposted to the following resources:

• Long-term effects of COVID-19 (long COVID) - NHS (www.nhs.uk), advice for patients on self care and managing expectations during recovery.
• Sirona website Long COVID Service – Sirona care & health NHS services (sirona-cic.org.uk)
• Hope Programme*- Peer Support and self-management COURSES — Hope For The Community CIC (h4c.org.uk)
• NHS Talking Therapies - Bristol, North Somerset & South Gloucestershire (vitahealthgroup.co.uk)
• Self-management advice and support for anosmia- Home - Fifth Sense

*The Hope programme is available to patients across the South West (funded until March 25). The Hope programme is a 6-week facilitated online course for patients that supports self-management. Courses run regularly throughout the year.

Long COVID Clinic (Sirona)

*Current waiting times are under 4 weeks* updated May 24.

There is currently no specific test or treatment available for Long Covid. However, we are able to provide advice with regards to managing “treatable traits”.

The Long Covid Service is run by Sirona to provide a multidisciplinary assessment and rehabilitation service for people with symptoms of Long COVID. They work in partnership with the Bristol ME service and NHS Talking Therapies.

The service may include:

• Initial holistic assessment to identify main symptoms and their impact.
• Identification of Long Covid associated “treatable traits” e.g. Postural Tachycardic syndrome (POTS), Mast Cell Activation Syndrome (MCAS) and Breathing Pattern Disorder (BPD).
• Management advice for treatable traits
• Fatigue management and referral
• Symptom management strategies and referral

Please note that the service is unable to order or undertake blood tests or imaging. They work in partnership with primary care and make recommendations where appropriate.

Anxiety and depression:

There is a strong association between Long Covid and the development or worsening of anxiety and depression. Patients should be screened for anxiety and depression prior to referral and should be asked about suicidal ideation and self-harm. Appropriate treatment and referral should be managed by primary care. Safety is the priority, however, mental health conditions should not prevent referral.

Exercise and Long Covid:

It is well documented that physical activity is essential for physical health and mental wellbeing. However, for some people with Long Covid, standard advice to increase activity to aid recovery can be detrimental.

Thorough history taking should include questions regarding post exertional symptom exacerbation or malaise (PESE/PEM). This is characterised by a “boom and bust” pattern where even small increases in mental, physical or cognitive activity can lead to an increase in symptoms. This can be experienced immediately or up to a week after the activity. The “bust period” can last from a few hours to months. If PESE/PEM is suspected, referral to the Long Covid service is recommended.

Referral

Patients should be appropriately assessed to identify and appropriately manage underlying pathology, prior to referral to the Long Covid service. This includes appropriate management of underlying mental health issues and psychological distress.

Referrals will be refused and returned to the referrer if the following investigations have not been completed in the previous 6 months or post infection (whichever is most recent):

• FBC, TSH, HbA1c, U&E, LFT, CRP, TTG antibodies, Calcium, creatinine kinase (see Long Covid profile on ICE).

Referral criteria:

• Aged 18 or over
• Registered with a GP in BNSSG (exceptions made for those unregistered and living in the BNSSG area)
• Symptoms started following a confirmed or suspected COVID-19 infection
• Any acute mental health concerns including suicidal ideation must be supported by appropriate services (the Long Covid service is unable to provide emergency or intensive support).

Please complete the referral form and send to: sirona.longcovid@nhs.net.

The service is unable to accept self-referrals and can only accept secondary care referrals if the pre assessment investigations have been completed within the stated time frame.

Resources

Long-term effects of COVID-19 (long COVID) - NHS (www.nhs.uk)

NHS England - Advice and Resources for healthcare professionals in primary care - July 2022

Course: COVID-19 Resource Hub | RCGP Learning

guidance for health care professionals and employers Return to work information for patients, clinicians and employers.

Research:

Researching long COVID | NIHR

Efforts are made to ensure the accuracy and agreement of these guidelines, including any content uploaded, referred to or linked to from the system. However, BNSSG ICB cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

Information provided through Remedy is continually updated so please be aware any printed copies may quickly become out of date.