Long Covid occurs in some people after they’ve been infected with coronavirus. It can develop regardless of the severity of the original infection and can last for months, even after coronavirus tests show you are clear of the original infection.
Almost a year since the first coronavirus cases were reported in China, there is still much to learn about long Covid. Those who suffer from long Covid symptoms are coming together to share their stories. Plus, clinics and potential treatments are finally starting to emerge.
But what exactly is long Covid, what are the symptoms and how can you get help if you think you might have it?
What is long Covid?
Nisreen Alwan, associate professor in public health at the University of Southampton, defines long Covid as: “not recovering [for] several weeks or months following the start of symptoms that were suggestive of covid, whether you were tested or not.”
In an online webinar for the British Medical Journal, Nisreen described the the main symptom of long Covid as debilitating fatigue and explained: “A very common feature [of long Covid] is the relapsing, remitting nature of the illness, where you feel as though you’ve recovered, then it hits you back,” she said.
Sufferers can experience a number of symptoms, which vary in intensity and duration. Some of them are similar to the main symptoms of coronavirus. These include breathlessness, headaches, chest, joint or muscle pain, a cough, and a loss of taste and smell. There can also be damage to the organs. Brain fog, low mood and anxiety have also been reported.
The medical profession has noticed that long Covid is similar to other post viral conditions. “Since April, the ME Association has been dealing with an increasing number of people who have long Covid. It resembles the post viral fatigue syndrome that often precedes ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome),” explains Dr Charles Shepherd, Hon. Medical Adviser at the ME Association. “There’s very much an overlap with ME/CFS symptoms – people with long Covid get debilitating fatigue that’s aggravated by activity and brain fog, and so on.”
What are the symptoms of long Covid?
“A significant proportion of people with long Covid have a cluster of symptoms,” says Dr Shepherd. These include:
- Activity-induced fatigue
- Muscle pain
- Brain fog
- Dysautonomia (problems regulating pulse and blood pressure)
- Post-exertion malaise
- An exacerbation of symptoms
“These symptoms are consistent with post viral fatigue [which can develop after a virus or infection] that often precedes a diagnosis of ME/CFS,” he explains.
There are differences between long Covid and post viral fatigue. “There’s a sub-group of people with symptoms relating to parts of their body initially affected by Covid, such as the lungs, heart, liver, kidneys, brain, skin or abdominal pain,” says Dr Shepherd. “The bottom line is that while symptoms are very similar to ME/CFS, other symptoms are unique to Covid.”
Paul Garner, who has long covid, told the BMJ that having it has left him feeling “repeatedly battered the first two months” and then experiencing lesser episodes in the subsequent four months with continual fatigue. “Navigating help is really difficult,” he said.
Is long Covid contagious?
Long Covid is not regarded as contagious.
If you have long Covid, it won’t prevent you from being re-infected with coronavirus. If you do catch Covid-19 again, you’ll then be contagious for around 10 days (possibly longer) and will need to self-isolate. To avoid catching the virus again, you should wear a mask, wash your hands regularly and practice social distancing.
What causes long Covid?
More research is needed to hone in on exactly what causes long Covid. However, there are some theories.
“One hypothesis is that post viral symptoms are caused by inflammation,” says Dr Shepherd. “The virus can cause a disturbance of the immune system.” It’s a consistent abnormality seen in ME/CFS sufferers, he explains, which can result in autoimmune disorders. It’s also, possibly, “why we’re not seeing it in elderly people as our immune system declines as we get older.”
Who is most likely to have long Covid?
“People who are getting long Covid fit the picture of people who get ME. These are young, fit adults between 20-50 years old, who are predominately female (around 70%),” explains Dr Shepherd. “The vast majority that we’re dealing with had mild or moderate symptoms and self-managed at home. They didn’t have to go to hospital. Some had almost got better then relapsed with symptoms.“
It’s too early to tell how soon sufferers will recover. “The overall outlook appears to be very uncertain,” says Dr Shepherd. “Some people have stabilised and a few have deteriorated. While some are making a progressive improvement they appear to be in a minority.”
Is there a test for long Covid?
There is no test for long Covid yet. People tend to diagnose themselves based on if they know they have had coronavirus previously and if they find themselves suffering from the symptoms described earlier in the article.
Ways you can help yourself
Experts suggest that one of the best ways to help yourself is ‘activity management’. According to the NHS, this involves ‘setting individual goals and gradually increasing your activity levels. Keep a diary of your current activity and rest periods to establish your baseline. Activities can then be gradually increased in a way you find manageable.’
Further ways to manage symptoms include graded exercise therapy (GET), cognitive behavioural therapy (CBT) and lifestyle changes.
You can also help yourself by eating the right diet and getting enough rest. “Long Covid is still not fully understood and, as such, the evidence demonstrating the best nutritional support is limited,” says nutritionist and Nutritionist Resource member Dr Kirstie Lawton.
“However, some of the foods and supplements that practitioners are currently using to support clients are based on reducing inflammation in the body and optimising immunity.”
Dr Lawton recommends getting vitamin D, vitamin K2 “to support the function of Vitamin D in the body” and magnesium. These will also help to reduce anxiety and improve sleep quality. Similarly, it’s also important to strengthen your immune system by taking zinc, as well as vitamins A, C and E.
You may also benefit from avoiding “inflammatory foods and drinks, such as sugar and alcohol, and increase your intake of anti-inflammatory foods such as fatty fish and turmeric,” says Dr Lawton. “Weight loss in those who are overweight is also essential for reducing systemic inflammation.”
Consider supplements such as “N-Acetyl Choline (NAC), which is required for the production of the powerful antioxidant glutathione (which supports energy production)” says Dr Lawton. “Also, guercetin and resveratrol, which has antioxidant and anti-inflammatory properties.”
You should only take supplements under the guidance of a qualified health professional and in consultation with a GP.
Where are the long Covid clinics?
In response to the thousands of people suffering ongoing symptoms, the government announced that specially created long Covid clinics will start taking patients at the end of November 2020. These will provide teams of doctors, nurses, therapists and other NHS staff to assess people who are still suffering from Covid.
Here’s where the clinics will be:
- 10 in the Midlands
- 7 in the North East
- 6 in each of the following: the East of England, South-East and South-West
- 5 in London
- 3 in the North-West.
“If you think you have long Covid your first port of call is your GP because if you have ongoing symptoms you’ll need to see experts,” says Dr Shepherd. “There will be a network of clinics but you can’t self-refer, so if you feel you’re not being heard make your case forcefully to your GP.”
As part of a group set up by the Health Minister to report on all aspects of Covid, Dr Shepherd said he’s created guidelines so GPs “understand that patients need to be listened to, believed and not have their symptoms dismissed as anxiety.”
Most importantly, don’t suffer in silence – there is help out there.
Where to get more advice and support
If you or a loved one have long Covid symptoms and need further information take a look at these resources.