Around two million people in the UK are living with long Covid. We know the signs and symptoms but we still don’t know all that much about what exactly causes it – and how patients can get better, sooner.
For almost as long as we’ve known about Covid-19, we’ve known that – for some people – the symptoms hang around for a long time after they’ve recovered from the initial infection.
These are the words of a healthcare worker called Janine, recorded by Scotland’s National Wellbeing hub:
“The breathlessness persisted , but not, not for a very long time. It was more the lethargy. And I had temperature instability as well. Sometimes I would just start profusely sweating out of the blue. And it was just, uh, an overwhelming feeling of having new energy as if your bones have been drained.”Janine, Scottish National Wellbeing Hub
Janine’s symptoms are all pretty typical of long Covid.
Other people experience headaches, muscle weakness, pain, stomach aches, brain fog and heart palpitations.
They all add up to a condition that can be really debilitating.
And millions of people around the world are impacted by it.
“Researchers think as many as 23 million Americans are dealing with long Covid”.NBC News
“Now nearly 2 million people are living with long COVID in the UK. That is according to shocking new figures from the office for national statistics.”Channel 5 News
It’s thought that around 7 per cent of people who get a Covid infection will end up with long Covid. The chances of you getting it are less if you are vaccinated.
But what exactly is it?
Because long Covid is so new, there are a few different definitions of what it means and what counts as long Covid:
“We say people should start worrying about three months after their acute COVID-19 illness. That gives some people to recover from the acute infection. Even if they’ve had mild disease or more severe disease after three months. That’s when we say, if you have one of these symptoms, then be concerned that you could have post COVID-19 condition and get evaluated.”Dr Janet Diaz, WHO information video
That’s Dr Janet Diaz, she’s the head of clinical care at the World Health Organisation’s emergencies programme – and one of the doctors in charge of the covid response.
The WHO says you might have long Covid if symptoms persist for more than three months after the initial infections.
The Centres for Disease Control and Prevention, the public health body in the United States, says that if your symptoms are still hanging around one month after you got infected, that counts as long Covid.
There are a few different theories about why it happens too:
Some doctors think it’s part of an immune system reaction to the covid infection.
Others think it’s to do with the damage the infection did to the body.
The truth is, that it could be all of those things.
Patients have a whole range of different symptoms, but even though their conditions aren’t the same they still all fall under this one name: long covid.
Because it’s difficult to define, and difficult to pinpoint why it’s happening, some patients have found that doctors don’t really know how to help them.
“Well there’s a lot of stigma attached to long covid. There’s a lack of understanding about what people need and how long they’ll be unwell for and sometimes a lack of empathy.”Janine, Scottish National Wellbeing Hub
Some have even been told: it’s all in your head.
That’s an attitude that people with other hard to explain and hard to treat conditions like Chronic Fatigue Syndrome hear a lot.
Doctors say: There’s nothing really wrong with you physically – so it must be a psychological problem.
But while mental health issues are certainly a part of the bigger package of symptoms that people with long Covid experience, it’s not the whole story.
In fact, the list of possible symptoms of long Covid runs to more than 200.
So how can a condition which presents in so many different ways be treated?
The best practice for treating long Covid involves a mixture of different treatments: physio, psychology, counselling, lung treatments and breathing exercises can all help.
Here’s Dr Janet Diaz again:
“We do recommend that the care of patients with post COVID-19 condition be done in a coordinated, integrated way…In case you need evaluation by a specialist that it could include a neurologist or a cardiologist or a pulmonologist or a mental health specialist or a rehab specialist, or someone to help with social work.”Dr Janet Diaz, WHO video
So mental health is part of the picture, but that’s mainly because living with a life altering condition like long Covid can take a big psychological toll.
It’s difficult to get used to symptoms such as feeling tired all the time when you’re used to living a busy, active life.
But ultimately, with changes – and plenty of rest – it is possible to get better.
Here’s that Scottish patient, Janice, again:
“Everyone’ experience of long covid is very different but how I feel now compared to how I felt in 2020 is just miles apart. I think it’s just having the realisation that for most people this will get better over time and it’s allowing yourself time to recover.”Janine, Scottish National Wellbeing Hub
Although it might not feel like it if for people with long Covid, there is hope.
Hope that they will get better… and hope that, eventually, we will have a better understanding of what causes it – and how to treat it.
Today’s episode was written and mixed by Ella Hill.