Dr Penny Geer, Dr Elizabeth Ford and colleagues offer advice on how GPs can help manage patients with persistent Covid-19 symptoms who had not been hospitalised
For Covid-19 patients who were admitted to hospital, there are a number of local and national initiatives for follow-up and rehabilitation. NHS England has produced guidelines for the aftercare needs of inpatients1, and announced an online rehabilitation service.
But over the past three to four months, it has become clear that there is a group of patients affected by Covid-19 who weren’t admitted but are now seeking support in general practice. There is no sign that NHS England’s follow-up guidelines apply to these patients; they are slipping through the gaps of these services, meaning their care falls on the shoulders of general practice.
This cohort of patients often experienced symptoms consistent with Covid-19 during March and April and mainly stayed at home, following the advice at the time to avoid burdening the healthcare system if possible. Many, therefore, did not consult their GP at the onset of their Covid-like illness and because they weren’t hospitalised, did not have access to a timely Covid-19 test.
Patients who had a swab test after the infectious period were likely to get a negative result, whatever their prior SARS-CoV2 status, meaning many in this group remain without a formal diagnosis. In many cases, they had been otherwise healthy, and this and their young age may have helped them stay out of hospital. Nevertheless, these ‘long-term’ Covid-19 patients often describe themselves as feeling ‘ill as they have ever felt’ and say their symptoms are ongoing, without full recovery.
What is long-term Covid-19?
A small body of literature is emerging about the presentation of long-term Covid-19. This applies to people who have either recovered from Covid-19 but are still report lasting effects of the infection, or have had the usual symptoms for far longer than would be expected.2 Ongoing symptoms are reported as common in patients with Covid who were discharged following long stays in hospital3,4 but there is less information on patients who were never hospitalised. Available literature suggests patients report a range of symptoms affecting multiple body systems5-7 (see table 1). It is not yet clear whether these map onto typical postviral fatigue or if there are Covid-specific symptoms.8 Patients report severe fatigue or exhaustion (‘sometimes getting up was impossible’), ongoing fever and shortness of breath. Many report pain, which can be almost anywhere in the body. Symptoms in other systems have also been described.6
One feature that seems to be common among all these patients is that any exertion seems to set them back, and they can experience the full range of symptoms again.9 As part of our study, we spoke to 20 self-reported long-term Covid patients. One previously fit 36-year-old told us she now felt symptom free, but that even very light gardening or housework lead to symptoms returning, particularly shortness of breath.
Patients also reported struggling with the uncertainty around the condition, with symptoms coming and going unpredictably. For example, they may seem to recover for a week, only for symptoms to come rushing back. Low mood or anxiety may be a corollary of these symptoms, but was not generally present at illness onset. Many of these patients have had a range of tests requested by their GP or after visiting A&E. There has been no research on this yet, but anecdotally, patients report the tests have come back clear; for example, their oxygen saturation is normal, they have no, or borderline, inflammatory markers, and no abnormal features on chest, brain or kidney scans.
As we are just months into the pandemic, the long-term effects of infection will not be known for some time.
Could it be something else?
How likely was the original diagnosis of Covid to be accurate?
A cough with a temperature could be due to any number of viruses, for example flu. However, flu levels were below baseline across the UK in the early part of the year,10 making Covid-19 more likely. Also, a loss of taste or smell increases the probability of a Covid-19 diagnosis.11
How likely are the symptoms to be related to the Covid infection?
This is currently unclear and is the subject of the post-hospitalisation Covid-19 study (PHOSP-COVID) led by NIHR Leicester Biomedical Research Centre.12
What other significant diagnoses should be considered that might produce similar symptoms?
We need to exclude other causes of extreme fatigue and breathlessness, including considering the advice given in the NICE suspected cancer recognition guidelines.13 The NICE guidelines on assessment for chronic fatigue syndrome14 suggest the following baseline tests:
• Urinalysis for protein, blood and glucose.
• Full blood count.
• Urea and electrolytes.
• Liver function.
• Thyroid function.
• Erythrocyte sedimentation rate or plasma viscosity.
• C-reactive protein.
• Random blood glucose.
• Serum creatinine.
• Screening blood tests for gluten sensitivity.
• Serum calcium.
• Creatine kinase.
Specific Covid complications and how to manage them
It is too early for a full understanding of what symptoms may represent specific Covid complications in community patients and there is still little research on this. A risk of cardiac failure and lung fibrosis has been extrapolated from similar viruses, such as SARS, and recent evidence suggests Covid can affect multiple body systems, including the brain, heart, pancreas, skin, thyroid, gut, kidneys and musculoskeletal system.5
In managing possible long-term Covid, consider the following:
• Sleep hygiene techniques
• Energy conservation techniques such as pacing, planning and prioritising. Split jobs into chunks and rest in between.15
• Gradual activity increase.
• Gentle exercise.
• Healthy diet.
Cardiac and respiratory symptoms
• Consider ECG, BNP and chest X-ray for persistent symptoms.
• Pulmonary or cardiac rehabilitation may be beneficial. This can be web based in some areas.
• Consider referral to speech and language therapy for chronic cough.16
• Draft NICE guidance published for consultation in August 2020 recommends exercise, acceptance therapy, acupuncture, CBT and antidepressants for chronic pain.
• Exercise to improve reconditioning.17,18
• Screen for depression and anxiety.
• CBT to help with cognitive distortions that may hamper recovery.
• Techniques such as distraction or mindfulness to manage excess worry or preoccupation with physical symptoms.
• Advice about time off work and possible workplace adaptations.
• Practical suggestions, such as online shopping, asking friends and family for help and prioritising tasks.
• Signposting to local voluntary services or social prescribing.
• Peer support groups.
• Providing information for family and friends.
Patients will often be worried about being left unsupported with no advice, so it may help to make a plan together, including safety-netting advice about what needs to be checked, along with follow-up reviews to check progress. There are websites that summarise the latest information to help keep up to date.19 The NHS has also announced an advice website to help those recovering from Covid-19, available at yourcovidrecovery.nhs.uk/
Commonly asked questions from patients
What is causing my ongoing symptoms, is it active virus, inflammation, autoimmune problems, or something else?
A new virus like Covid-19 is likely to cause higher stress levels and a loss of control, with potentially reduced support from others due to uncertainty over infectiousness. This may predispose some to the development of a central sensitisation syndrome similar to chronic fatigue or fibromyalgia. An explanation based on this theory, such as the Hyland method, may increase patients’ understanding of their symptoms, and help them manage their recovery.20
Another potential explanation for ongoing symptoms, which is only just emerging in the scientific literature, is the possibility that Covid-19 results in vasculitis.21 This may explain the skin-related symptoms experienced by some long-term patients.22
Am I still infectious?
Current evidence suggests most people can be infectious for 10 days, with a small number shedding virus for up to 20 days. After this, there is no evidence for continuing infection.23
Will I make a full recovery? How long might that take?
We do not know the exact length of time for recovery, but we do know that for most acute illness, strategies such as pacing and self-care are beneficial. Duration of the illness will vary between individuals. Anecdotally, many long-term Covid-19 patients are reporting a slow trajectory towards recovery.
Might I have long-term damage to some of my organs?
There is a possibility that some people may develop long-term issues such as lung fibrosis and cardiac failure. This is why it is important to report ongoing and worsening symptoms.
Is there anything that could speed up recovery?
The cornerstone of recovery is self-care, including activities patients enjoy, a healthy diet, rest and gentle exercise. Expectations should be realistic.
The likelihood is these patients will recover, but at this stage no one knows how long it will take, so supporting the patient in accepting this unpredictability is important. GPs are accustomed to managing uncertainty, so we are in a good position to help patients manage their uncertainty alongside our own.
Can I have an antibody test to prove I had Covid?
Currently, we cannot test NHS patients for Covid-19 antibodies unless they are also NHS staff, a hospital inpatient or care home resident, so we are unable to confirm the original diagnosis.
So far there is no indication about the length of time antibodies are available for detection post infection, so there is no certainty this test will be helpful.24 Also, a positive result does not conclusively prove Covid caused the original or current symptoms; plenty of people have asymptomatic infection so symptoms could be caused by something else.
Dr Penny Geer and Dr Sangeetha Sornalingam are GPs and senior general practice teaching fellows at Brighton and Sussex Medical School. Professor Harm van Marwijk is a GP and professor in general practice, and Dr Elizabeth Ford is senior lecturer in primary care research at Brighton and Sussex Medical School
For more CPD, go to Pulse Learning
2) Mahase, Elisabeth. “Covid-19: What do we know about “long covid”?.” BMJ 2020 370:m2815.
3) Carfì, Angelo, Roberto Bernabei, and Francesco Landi. “Persistent symptoms in patients after acute COVID-19.” JAMA (2020). doi:10.1001/jama.2020.12603
4) Halpin, S.J., McIvor, C., Whyatt, G., Adams, A., Harvey, O., McLean, L., Walshaw, C., Kemp, S., Corrado, J., Singh, R., Collins, T., O’Connor, R.J. and Sivan, M. (2020), Post‐discharge symptoms and rehabilitation needs in survivors of COVID‐19 infection: a cross‐sectional evaluation. J Med Virol. Accepted Author Manuscript. doi:10.1002/jmv.26368
5) Lokugamage, AU., Taylor, S., Rayner, C. Patients’ experiences of “longcovid” are missing from the NHS narrative. BMJ Opinion July 10, 2020. [Available from: https://blogs.bmj.com/bmj/2020/07/10/patients-experiences-of-longcovid-are-missing-from-the-nhs-narrative/]
6) Assaf, G., Davis, H., McCorkell L., et al., 2020. What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. Accessed from: https://docs.google.com/document/d/1KmLkOArlJem-PArnBMbSp-S_E3OozD47UzvRG4qM5Yk/edit#heading=h.tl7frov254ll
7) O’Keefe, JB., Tong, EJ., Datoo O’Keefe, GA., Tong, DC. Predictors of disease duration and symptom course of outpatients with acute covid-19: a retrospective cohort study (2020) medRxiv 2020.06.05.20123471; doi: https://doi.org/10.1101/2020.06.05.20123471
8) Wilson, C. Could the coronavirus trigger post-viral fatigue syndromes? New Scientist (15 April 2020) [Available from: https://www.newscientist.com/article/mg24632783-400-could-the-coronavirus-trigger-post-viral-fatigue-syndromes/#ixzz6KAjjR7iW].
9) Longfonds. Peiling schetst schokkend beeld gezondheid thuiszittende coronapatiënten (12 June 2020). [Available from: https://www.longfonds.nl/Peiling-schokkend-beeld-gezondheid-thuiszittende-coronapatienten]
10) Public Health England. Surveillance of influenza and other respiratory viruses in the UK Winter 2019 to 2020. [Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/895233/Surveillance_Influenza_and_other_respiratory_viruses_in_the_UK_2019_to_2020_FINAL.pdf]
11) Menni, C., Valdes, A., Freydin, M.B., Ganesh, S., Moustafa, J.E.S., Visconti, A., Hysi, P., Bowyer, R.C., Mangino, M., Falchi, M. and Wolf, J., 2020. Loss of smell and taste in combination with other symptoms is a strong predictor of COVID-19 infection. MedRxiv. https://doi.org/10.1101/2020.04.05.20048421
12) PHOSP-COVID Improving long-term health outcomes [https://www.phosp.org/]
13) NICE. Suspected cancer: recognition and referral. https://www.nice.org.uk/guidance/ng12
14) NICE. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. https://www.nice.org.uk/guidance/cg53
21) Almashat, SA. “Vasculitis in COVID-19: A Literature Review.” Journal of Vasculitis (2020) 6:1. DOI: 10.37421/J Vasc.2020.6.129
22) de Perosanz‐Lobo, D., Fernandez‐Nieto, D., Burgos‐Blasco, P., Selda‐Enriquez, G., Carretero, I., Moreno, C. and Fernández‐Guarino, M. (2020), Urticarial vasculitis in COVID‐19 infection: a vasculopathy‐related symptom?. J Eur Acad Dermatol Venereol. doi:10.1111/jdv.16713
24) Deeks JJ, Dinnes J, Takwoingi Y, Davenport C, Spijker R, Taylor-Phillips S, Adriano A, Beese S, Dretzke J, Ferrante di Ruffano L, Harris IM, Price MJ, Dittrich S, Emperador D, Hooft L, Leeflang MMG, Van den Bruel A. Antibody tests for identification of current and past infection with SARS‐CoV‐2. Cochrane Database of Systematic Reviews 2020, Issue 6. Art. No.: CD013652. DOI: 10.1002/14651858.CD013652.