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What are the long-term health impacts of coronavirus?
In some COVID-19 patients, post-viral illness continues for weeks. But with a wide variety of symptoms, doctors and researchers are now racing to produce clear guidelines on what patients should expect in the long term.
When the first COVID-19 infections were reported in the UK last January, it came just two months after the very first case on record anywhere. Around the world, doctors were collecting and sharing information about transmission, initial symptoms and prognosis.
But by May, the British media were covering what people called "long COVID". A number of people who had experienced an initial COVID-19 infection and recovered, experienced relapsing tiredness, amongst other symptoms.
Data from the UK's COVID Symptom Study app suggests that one in ten people who catch COVID-19 still experience symptoms after three weeks.
A recent British Medical Association press release warned that the effects of 'long COVID' would be profound. Almost a third of the 4,000 doctors surveyed had seen or treated patients with symptoms they believed were a longer-term effect of COVID-19 within the first two weeks of August.
Paul Garner, a professor at Liverpool School of Tropical Medicine, wrote about his experience of 'long COVID' for the BMJ. Although he was never admitted to hospital during his initial COVID-19 infection, after he recovered he experienced weeks of relapse.
Prof Garner reported that he'd experienced fatigue and tingling nerves and his relapses felt like a 'reprint' or 'embodied memory' of his initial illness.
He wrote: "It was as if I was being followed by phantom speed cameras. You don’t know the speed limit and you don’t know when the penalties will arrive ... When they do they are harsh, stopping you in your tracks for days."
Karen Rawden, a counsellor in Northamptonshire, also experienced a long recovery period after symptoms initially appeared in early March. She had previously experienced ME and cancer and knew the importance of resting, and of spotting signs fatigue was coming.
With both the ME she experienced as a student, and the long COVID she's currently recovering from, her fatigue would come and go.
"I would call it a reverse payday," she says. "I would almost be given all this energy and then if I spent it too quickly, I would have to pay for it later. But if I could let go of all the stuff I was meant to be doing or wanted to be doing, what I found was that those recovery times became less intense."
Rawden also started a Facebook group for people in the UK with long COVID.
"I realised really early on I wasn’t going to get through this unless I found people who are going through a similar experience,” she says. "I thought, 'Surely I'm not the only one going through this'."
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Dr Poppy Freeman, a GP in Camden, set up a dedicated website for GPs struggling to sift through the mountain of information about COVID-19 infections and the long-term health impacts of the disease.
"I and my colleagues know that patients are presenting with a wide range of different symptoms after being ill with COVID-19," she says. "These include fatigue, palpitations, low mood and anxiety, and ongoing shortness of breath."
Fatigue is 'by far' the most commonly researched symptom on the site, Dr Freeman reports.
"It's a difficult time for GPs as we recognise that some patients are really struggling," Dr Freeman added. "Different post-viral symptoms continue to emerge and we don't have any national guidance on how to support these patients in primary care whilst services are in the process of being set up."
Researchers from the COVID Symptom Study also listed fatigue, plus headaches, coughs, anosmia (loss of smell), sore throats, delirium, and chest pain. They emphasised that people continue to have symptoms after they are no longer infectious to others.
One of the three main symptoms of an initial COVID-19 infection is a new continuous cough. A survey by the British Lung Foundation and Asthma UK of people with long COVID highlighted that 90% still had trouble with breathing (90%) and cough (22%). The majority of people they surveyed had not had trouble with these symptoms before.
"A cough for more than 6-8 weeks would normally be investigated in primary care in the first instance as it could be due to a non-COVID-19-related cause such as acid reflux or asthma," Dr Freeman advises. "However, prolonged breathlessness after this length of time needs to be investigated in secondary care. GPs are doing their best to support patients with a wide range of symptoms whilst rehabilitation services are yet to be set up nationally."
For people who do not need to investigate their cough or breathing problems, doctors at Homerton University Hospital in London compiled a patient information resource with clear practical advice that includes managing a cough or breathlessness and clearing phlegm, as well as advice on fatigue, mood and diet.
Physiotherapists have also advised a need for COVID-19 rehab services.
Time off work
For some people recovering from COVID-19, symptoms will prevent them from working or from caring for their loved ones, or create anxiety about fulfilling responsibilities. In these cases, Dr Freeman recommends that patients ask a GP for help.
"Your GP can help you to set manageable goals," she says. "It is important to avoid periods of over-exertion as these can lead to a deterioration of symptoms. GPs can write sick notes when needed, but they can also write fit notes to support patients to return to work gradually which in my experience allows patients to better negotiate with their employers.
"This could be a phased return, reduced hours or light duties for example. Being off work for prolonged periods can significantly affect well-being. If people can find a way to make some return to work within the context of their recovery this is protective in the long run."
If you can, Rawden advises, make a list of free helplines like Samaritans and Anxiety UK. "The Institute of Psychosynthesis has a list of phone numbers of counsellors and psychotherapists who are trained to listen - these professionals, although not offering counselling, volunteer their time to be a listening ear to anyone who is struggling, all free of charge." She also mentions The Spiritual Crisis Network, and suggests that local places of worship might have pastoral care available by phone as well.
Patients who were hospitalised from COVID-19 have been invited to join a new study of 10,000 to report on their health for a year or more. Findings will be used to improve long-term outcomes for patients with acute cases in future.
NHS Blood and Transplant are currently recruiting people to donate plasma to treat COVID-19 patients. You may be eligible if you have:
- Tested positive for coronavirus.
- Tested positive for antibodies.
- Had symptoms of the virus (men only).
- Met their eligibility criteria.
The charity Patient Safety Learning has compiled recommendations for prioritising patients with long COVID.
Research into COVID-19 may also shed light on other conditions with fatigue. Last month NICE warned that doctors should not assume graded exercise therapy, used in the past for ME and chronic fatigue, works for COVID-19. Authors acknowledged that the evidence for graded exercise may be out of date for other conditions too.
It seems NICE's message hasn't been fully taken up yet. The NHS has launched a new service for people with long COVID but some patients have criticised its approach, saying it asks too much too soon. But importantly, the NHS's Your COVID recovery service recognises that these are physical complications of infection and not a mental health condition.
"Doctors need to stop diagnosing this as anxiety," Prof Garner concluded. "We have messed up before; let's not do it again with long-term COVID-19 illness."