Since the start of the pandemic, thousands of people in the UK have been left with debilitating long-term symptoms. Dubbed ‘long Covid’ by those still struggling, there have been calls for more research to explore why it happens, as well as greater medical support for those experiencing it.
Academics have now suggested long Covid (or ongoing Covid, as some call it) might actually be four different syndromes, which could explain the huge differences in symptoms and experiences among long-haulers.
Some people are still suffering symptoms several months after infection. Others, who had a mild illness at the start, can have worse ongoing symptoms than patients who needed intensive care treatment. And another group are people are living with a “rollercoaster of symptoms” that “move around the body”.
Researchers from the National Institute for Health Research reviewed the available – and so far limited – evidence and examined reports from people of all ages and backgrounds with long Covid.
They suggested the issue might not be one illness, but rather four different syndromes, which some patients may be experiencing simultaneously.
1. Post intensive care syndrome (or PICS)
This is made up of cognitive, psychiatric and/or physical disability after treatment in an intensive care unit (ICU).
People might develop muscle weakness, which can take more than a year to recover fully, according to the Society of Critical Care Medicine. It’s often linked to patients who went on ventilators or stayed in the ICU for at least a week. Some people might also have cognitive issues like struggling to pay attention, solve problems and sleep.
2. Post-viral fatigue syndrome
Post-viral fatigue is a prolonged fatigue that starts when a person comes down with a viral infection and then continues for a longer period of time after the infection has gone.
People who experience severe fatigue will often describe a feeling of complete physical and mental exhaustion which is different to the everyday tiredness that everyone will experience at times, according to a guide written by The British Association for CFS/ME (BACME).
For these people, rest and sleep might not feel refreshing, and the debilitating exhaustion can impact on all parts of life including school, work, home life, social activities, sport and relationships.
3. Permanent organ damage
We know that some people infected with Covid-19 have ended up with organ damage as a result of the virus. There have been reports of patients experiencing damage to the lungs, heart and nervous system. This is more common in people who were hospitalised but has also been shown in some so-called ‘mild’ cases.
4. Long term Covid syndrome
A “significant group” of people have debilitating symptoms that do not fit any of the above three categories.
They describe the rollercoaster of symptoms that move around the body, whereby they suffer an illness linked to one part of the body – such as the respiratory system, the brain, cardiovascular system and heart, the kidneys, the gut, the liver or skin – which later abates only for new symptoms to arise in a different part of the body.
The importance of defining it
Such a wide range of symptoms, and different presentations of illness, mean that it is hard for doctors to diagnose and therefore difficult for patients to access the appropriate care.
Researchers said they did not like the term “long Covid” because it may mean that some patients struggling with ongoing after-effects are being missed.
They called for anyone who believes they are suffering long-term after-effects to be logged as such in their NHS records, and the health service should adopt an approach of a “working diagnosis” to help those in need.
Academics stressed that the understanding of the effects are still at an early stage.
Dr Elaine Maxwell, review author, said: “We know from a number of surveys both in the UK and across the world, that a significant number of people experience ongoing effects after a Covid-19 infection. The list of symptoms is huge and covers every part of the body and brain.
“We heard from people who are still unable to work, study or care for dependents several months after their initial infection. We believe that the term ‘long Covid’ is being used as a capsule for more than one syndrome, possibly up to four.”
She said the “lack of distinction” between these syndromes may explain the challenges people are having in being believed and accessing services.
“Some people experience classic post critical illness symptoms, others experience fatigue and brain fog in a way that’s consistent with post viral fatigue syndrome,” she explained.
“Some people have clear evidence of permanent organ damage caused by the virus, particularly lung damage and heart damage. But a significant group have debilitating symptoms that do not fit any of those three categories. They describe the rollercoaster of symptoms that move around the body.”
She added that for some people there are “real” psychological and mental health issues including anxiety and depression, and that understanding the differences between the syndromes is vital for helping patients recover.