Long COVID: what we know about this debilitating illness

The COVID pandemic has brought us to our knees. As we struggle to cope with recovery from COVID, we realize that for some people the illness is not quite over. They have long COVID.

For some, lives have changed completely after COVID. For many months, medical teams did not acknowledge people when they continued to complain of symptoms of long COVID like fatigue and brain fog.

Now, we have a guideline by NICE on how to manage long COVID. There are special clinics and extensive ongoing research to understand this enigma.

Few have remained unscathed by this pandemic. Many have lost loved ones. Most of us have either had COVID or have a family member who has had COVID. My son had COVID, but recovered alhamdulillah.

My husband, a chest physician, runs long COVID clinics. He tells me how many lives are disrupted, livelihoods lost with this illness.

Deaths from COVID are recorded and displayed in daily statistics. The ones with long COVID are the people ‘lost’ in the radar.

What is long COVID

NICE describes long COVID as symptoms of COVID continuing beyond 12 weeks. Some others have described it as symptoms continuing after 8 weeks.

1 in 10 people who contract COVID go on to develop long COVID.

People who develop long COVID may not be people who were seriously ill, or who were hospitalized.

The symptoms either seem not to get better, or they go through cycles of feeling better and getting worse.

Common symptoms of long COVID are:

  • Fatigue
  • Headaches
  • Breathlessness
  • Brain fog-unable to focus
  • Anxiety and depression
  • Palpitations
  • Chest pains
  • Muscle and joint pain
  • Difficulty sleeping
  • Inability to exercise
If you have diabetes, blood sugar control may become difficult. Some people may develop type 2 diabetes.

A new entity?

The director of the National Institute of Allergy and Infectious Diseases, Dr. Anthony Fauci, says that long COVID may be similar to chronic fatigue syndrome.

Chronic fatigue syndrome can be caused by many different viral illnesses like glandular fever. Some bacterial infections like pneumonia may also cause it. Individuals with weak immune systems are likely to get it. Stress and anxiety may be responsible in some cases.

Can you predict who will get long COVID

At present it is difficult to predict who will develop long COVID.

Scientists in Cambridge are carrying out genetic studies in people with long COVID.

The research should provide answers to why some people develop long COVID and others don’t.

If we know who will develop long COVID it may be possible to treat it early and maybe prevent it from happening.

Two studies in the UK, one from the University of Leicester, and the other from Glasgow seem to suggest that women under the age of 50 had 7 times more chances of developing long COVID than their male counterpart.

The Leicester study indicated that 18% of people couldn’t return to work and 19% had to change their job due to long COVID.

It has also been suggested that people with auto-immune conditions are more prone to develop long COVID. Again, women are more likely to have auto-immune conditions.

People with 2-3 underlying health issues like diabetes, hypertension and other conditions, who develop COVID, are more likely to have persistent symptoms.

What can you do if you develop long COVID

  • Speak with your GP. You should be able to get an appointment in a long COVID clinic. They will assess you and provide the support that you need. Physiotherapists, dieticians, and a clinical Psychologist are usually a part of the team along with a lead Chest Consultant.
  • If you get chest pain or shortness of breath, call emergency services by ringing 999
  • Some people may drop their oxygen levels on exercise. They may need home oxygen. Sometimes you may be asked to monitor your oxygen levels at home with a pulse oximeter.
If your oxygen levels are less than 95% you need to contact medical services.

Other things you could try:

  • Break down your tasks for the day into small manageable chunks
  • Rest in between jobs
  • Try and do bigger tasks at times of the day where your energy levels are good.
  • Gradually increase the amount of exercise you do every day without getting exhausted
  • Connect with family and friends
  • If you are struggling with memory, make notes to remind you of important things to do
  • Flexibility and strength exercises will help. Check with your doctor before embarking on anything new.
Remember that many people will recover.

Living with COVID 19 is a document by NIHR (National Institute of Health Research) which gives more insight into this condition.

Do I need vaccination if I have had COVID

Experts recommend that you should get vaccinated even if you have had COVID. We do not know how long natural immunity lasts.

You will be asked to have a vaccination after 2-3 months of a COVID infection.

A sobering thought

The University of Leicester research into long COVID has been published in The BMJ on the 30th March 2021. 48000 people with COVID who were hospitalized were followed up for 4 months. They found that 14 in 100 people in their study developed long COVID.

Their main findings were:

  • 3 in 10 people were readmitted to the hospital.
  • 1 in 8 people died.
  • A high risk of developing diabetes, kidney disease, liver disease, and heart problems (this risk is higher as compared to the general population).
The good news is that in many cases the organ damage will improve.

However, the researchers recommend that all effort should me made to keep infection levels low. There is immediate and long term effects of this illness which we still don’t know much about.

The medical teams are still figuring out how to monitor people who develop long COVID.

Questions that they are striving to answer – who is more prone and needs to be monitored, where to see them, how frequently, what tests should be done, and how to interpret the tests.

My last thought

Clearly, COVID is not like the flu. It has short and long term effects that can devastate lives.

Stay safe.

I don’t want to enter a debate on vaccination. In my humble opinion, vaccination has been seen to be protective.

More and more vaccines are going to be available in the future with a good safety profile.

I personally have taken the vaccine, so has my husband.

I would urge you to look into vaccination, do your research, do istikhara and go for it.

At present, social distancing and vaccination is the only weapon we have against this illness.

Do share any stories of yourself or anybody you know closely who may have long COVID. How are they coping? What helps?