Long COVID: What impact does it have on Carenity members' daily lives?
Published 30 Apr 2021 • By Candice Salomé
Fever, fatigue, shortness of breath… Many people struggle to recover from the symptoms of COVID-19, even several months after having it. When symptoms persist after more than a month, it is called Long COVID.
So what is the real impact of Long COVID on chronic patients’ daily lives? Which symptoms persist? How is Long COVID diagnosed? What do Carenity members living with Long COVID have to say about it?
We tell you everything in our article!
What is Long COVID?
Since the start of the pandemic, more than 4,400,000 people have tested positive for COVID-19 in the UK. Among the people infected, some have experienced acute symptoms while others have experienced little-to-no symptoms at all.
From the start of the outbreak, two forms of COVID-19 have been talked about in the media. These are:
- A mild form: This corresponds to a case of illness lasting about 14 days, from the onset of symptoms to recovery.
- A severe form: In this case, the patient usually needs to be hospitalised between the 5th and the 10th day, and he or she experiences more or less severe complications.
But as the pandemic has progressed, another form has emerged: Long COVID.
The National Institute for Health and Care Excellence, along with the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP), has defined Post-COVID-19 syndrome or Long COVID as: "signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis".
According to a study released by the Office for National Statistics, it is estimated that almost 14% of patients continue to experience symptoms for at least 12 weeks after initial infection. Another study organised by the University of Leicester of over 1,000 patients who had been hospitalised for COVID found that 70% had not fully recovered 5 months after they were discharged. The study authors also found that 1 in 5 study participants could be considered to have a new disability.
"Long COVID" is the name that patients have given to the phenomenon of experiencing symptoms that persist well beyond the "normal" duration of a COVID-19 infection. According to Professor Clair Andrejak, a pulmonologist at the Amiens University Hospital: “The normal duration of a COVID-19 infection varies from one person to another. Let’s say that if symptoms persist beyond one month after the first symptoms, it’s not completely normal”.
In addition, a patient with a severe form of COVID-19, who has had to be hospitalised or even admitted to intensive care, will need more time to recover from the infection than someone with a mild form.
However, the majority of Long COVID patients, often called "long-haulers", initially reported the mild form of COVID-19.
Nevertheless, to date, Long COVID is not considered to be a long-term illness. Numerous associations such as Long Covid Support in the UK, the Long-COVID Alliance in the US and #AprèsJ20 in France are campaigning worldwide for recognition of the disease.
What are the symptoms of Long COVID?
The most common symptom reported by patients is fatigue. This is a long-lasting fatigue that makes patients need to rest regularly.
Other symptoms are regularly noted, such as:
- Difficulty breathing or shortness of breath,
- Feeling of tightness in the chest,
- Dizziness on standing
- Loss of taste or smell,
- Difficulty thinking or concentrating (brain fog),
- Digestive issues,
- Fast-beating or pounding heart (heart palpitations),
- Joint or muscle pain,
- Depression or anxiety.
Long COVID symptoms often appear in “flare-ups” or “waves”, alternating between symptomatic periods and periods of remission. The duration of these waves varies from one patient to another. Patients living with Long COVID improve with time as the waves pass.
How is Long COVID diagnosed?
There are three criteria that are typically used to diagnose patients living with Long COVID. They are the following:
- Having presented a symptomatic form of COVID-19,
- Having presented one or more of the initial COVID-19 symptoms in the 4 weeks following the start of the illness,
- The presence of these symptoms cannot be explained by another diagnosis.
The persistence of symptoms after a COVID-19 infection is not always considered to be Long COVID. This is because COVID-19 may have revealed an underlying medical condition.
Patients should therefore meet with their GP who will make a diagnosis of elimination by verifying that:
- That there is no unknown pre-existing condition that has been revealed by the COVID-19 infection.
- That it is not a complication of COVID-19. It may no longer be the virus itself that is acting but a complication of COVID-19 that is causing new symptoms.
- That it is not a sequela (after-effect) of COVID-19 (such as respiratory after-effects, for example).
What do Carenity members living with Long COVID have to say about it?
We went through the “Living with Long COVID” forum on Carenity UK, US, France, Italy, Spain and Germany looking for testimonials from members affected by Long COVID. Here is what they had to say:
“I tested positive on 9 November, but I had had symptoms for 2 weeks prior: intense muscle aches and major fatigue, trouble focusing and memory issues. But no fever, no cough, no loss of taste or smell. This lasted for 6 weeks. The aches and pains have stopped for the most part but return from time to time, for 24 hours. I'm still very tired, I still have trouble focusing and getting my memory back. I now have pain in my chest and lungs and I feel discomfort when I breathe. A scan shows bilateral bronchiectasis!”
"I had COVID in March and I still have symptoms. I'm tired all the time. I feel like I've moved mountains with the slightest effort. I also have intestinal problems that never stop. Pain in my stomach and diarrhoea for several days that stops and starts again.”
"I was intubated and placed in a coma for two weeks. I was hospitalised for 28 days in November 2020. To this day I still have breathing problems, talking makes me breathless, excessive fatigue at the slightest effort, my taste and smell have returned but not like before."
"For me, the worst thing is my head. From the beginning I had terrible headaches and this constant feeling of like being on the verge of losing my mind because I can't concentrate or understand things well. That part comes and goes fortunately. The fatigue, on the other hand, is constant and prevents me from having a 'normal' life. It's terrible."
“I got COVID in mid-March with a relapse in mid-April where I was hospitalised. Today, the after-effects are still there and I am trying to improve my respiratory issues with a pulmonologist and intestinal issues with a gastroenterologist. I don't recognise myself anymore. My employer terminated my contract while I was in hospital.”
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