Information, links and resources
(with particular thanks to Trisha Greenhalgh, Professor of Primary Care, University of Oxford. Independent SAGE, who collated the bulk of this information)
A ‘patient-made’ term referring to symptoms persisting > 4 weeks after an acute covid-19 illness, and not explained by any other diagnosis. Includes ‘ongoing symptomatic covid-19’ (4-12w) and ‘post covid-19 syndrome’ (beyond 12w) [NICE].
Whilst most people who get acute covid-19 get better quickly, some don’t. In UK, 2 million people report symptoms for >4 weeks, 826,000 (42% of all long covid patients) in more than 1 year and 376,000 (19%) in more than 2 years.
Long covid is a constellation of symptoms across many organ systems. Fatigue is the commonest. Symptoms may fluctuate and flare up in response to triggers (physical or emotional).
WHO GETS LONG COVID?
Anyone can. It’s more likely after more severe acute illness and if
- aged 35-69
- other activity-limiting long-term conditions e.g. diabetes, heart disease
MENTAL AND SOCIAL EFFECTS
Being chronically ill and with unpredictable relapses may lead to loss of work, income and social interaction, leading to poor mental health. (But just because someone with LC has anxiety/depression doesn’t mean that’s what *caused* the LC).
Paper here on the illness narratives of people with long covid. When this condition was first described, nobody believed in it and symptoms were dismissed by family, friends and health professionals. We know more now; this disease is real!
WHAT CAN GPs DO?
Patients with long covid greatly value input from their primary care clinician. Notwithstanding uncertainties and lack of definitive curative therapies, generalist clinicians can help patients a lot: see next tweet. Several appointments may be needed.
GPs can help by hearing the patient’s story and validating their experience; providing holistic, relationship-based care; examining the patient in a face-to-face appointment; excluding alternative diagnoses; and directing to resources (links below).
GPs can also manage specific symptoms & comorbidities (esp diabetes /CVS); monitor progress (physical and mental) and share the uncertainties of prognosis; helping set realistic goals for recovery; provide sick notes and support self-advocacy (e.g. with employer)
WHAT TESTS ARE NEEDED?
There is no ‘standard panel’ of blood tests, images or other investigations for a person with long covid. This is because management is currently geared to identifying and managing risk factors and comorbidities, and treating specific symptoms.
Unexplained fatigue needs basic tests to exclude anaemia, low vit D levels, heart failure etc. Breathlessness needs basic tests of lung function including oximetry and (if indicated) a chest x-ray. If pulmonary embolus suspected, patient probably needs specialist referral.
Cardiac-sounding chest pain requires ECG and rapid-access clinic referral. Symptoms of autonomic dysfunction (rapid rise in pulse rate on standing) may indicate POTS (postural orthostatic tachycardia syndrome). (Often misdiagnosed as anxiety, sadly.)
‘Brain fog’ (poor cognitive function, memory probs) often accompanies (+ fluctuates with) fatigue. Use brief cognitive screening test (e.g. Mini Mental State). If unable to work or safety-critical occupation, refer for formal neuropsychological tests.Neurocognitive Profiles in Patients With Persisting Cognitive Symptoms Associated With COVID-19
ONLINE LONG COVID RESOURCES FOR PATIENTS
Good one here from NHS Hertfordshire aimed at UK patients:
Support for rehabilitation: self-management after COVID-19 related illness—a World Health Organisation guide for patients:
For patients who prefer a book, try The Long Covid Self-Help Guide:
For those who prefer a website, try Long Covid Recovery run by physiotherapists:
If the patient’s main symptom is problems with breathing, there’s a specialist physio website on ‘Breathing Pattern Disorders’:
For patients who are trying to return to work after long covid, try this: