Is the pandemic truly over? Not for ME.

After the 'end' of the Covid-19 health emergency, we look at similarities with ME and what we can learn from both chronic illnesses.

Last week, the World Health Organization (WHO) declared Covid-19 no longer represents a “global health emergency”. Although it doesn’t mean the pandemic is over, it is a major step towards it officially coming to an end. Officials said the virus' death rate had dropped from a peak of more than 100,000 to 3,500 people per week since January 2021. However, it is incredibly short-sighted to suggest the Covid-19 emergency is already over, especially when it’s estimated at least 2.0 million people are still suffering from symptoms of Long Covid in the UK.

There are currently more people living with Long Covid in the UK than with HIV (105,200).

WHO says anyone who has symptoms like fatigue or shortness of breath after three months may have the illness

The symptoms of Long Covid adversely affect the day-to-day activities of 1.5 million people, with the most common symptoms including fatigue, problems concentrating, shortness of breath, and muscle ache. However, there are lots of other symptoms: chest pain, loss of smell, insomnia, joint pain, and earaches are among the many. In fact, research has found there could be as many as 200 post-acute symptoms associated with Long Covid.

It’s still unknown what Long Covid could mean in the long-term, (10 or even 100 years down the line), especially since there are still new variants being found and nobody knows what symptoms they might have. One of the symptoms of the newest variant (Arcturus) was conjunctivitis. It’s also likely the number of people suffering from Long Covid is higher than we know, as the statistics come from self-reports and not everyone might have reported their cases. Furthermore, some people may be unaware their ongoing illness is Long Covid, as WHO says anyone who has symptoms like fatigue or shortness of breath after three months may have the illness.

Of the people who self-reported Long Covid, 89% had (suspected) Covid-19 at least 12 weeks previously, 61% a year previously, and 35% two years previously. Others, like Shaney Wright, have been dealing with Long Covid for three years now. He says the lack of urgency regarding treatments is “profoundly unethical and irrational”.

Nobody knows why some people never recover from Covid. As there are no definitive diagnostics, it’s almost impossible to develop and test treatments.

People who develop ME will live with it for the rest of their life and may experience flare-ups where it gets worse for a period of time

Another illness Long Covid is now being compared to is Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, which has a wide range of symptoms. Extreme tiredness, taking a long time to recover after a physical activity, and problems with concentration are all common for people with ME. It can also cause flu-like symptoms, as well as dizziness, nausea, and heart palpitations. Similar to Long Covid, it’s very difficult to diagnose ME, due to how many other illnesses have the same symptoms.

Unlike Covid, there are a variety of potential causes. ME can be a result of a viral infection (such as glandular fever), bacterial infection (such as pneumonia), or problems with the immune system in general. For instance, it is possible to develop ME because of a Covid infection. Other factors, including someone’s genes and hormone levels, play a role in the development of ME.

While some people with ME do improve with treatment — including medication to treat the symptoms and good energy management — there is currently no cure. People who develop ME will live with it for the rest of their life and may experience flare-ups where it gets worse for a period of time. Most will have to make major lifestyle changes after being diagnosed with ME, as it makes it difficult to carry out everyday activities. In addition to managing ME, people face the stigma associated with chronic illnesses, such as a lack of understanding (many don’t know conditions like ME exist) or even disbelief surrounding their disability. Illnesses like ME can also be invisible to the general public and, although plenty of awareness has been raised about invisible disabilities in recent years, this means people with ME suffer from ableism.

It’s estimated there are over 250,000 people in England and Wales with ME. The number may have risen following the pandemic, as viral infections can trigger ME to develop.

It was hypothesised it would take a global pandemic for people to start taking ME seriously

Covid-19 remains a serious health risk and a considerable source of anxiety for many with long-term conditions, including ME. Although it may not be a “global emergency” anymore, disabled people (especially those with chronic illnesses) are still being impacted on a daily basis. Action for ME’s Ruth Richardson, Director of Business Support and Development said: “We would encourage people to be responsible and considerate towards people with chronic conditions like ME in their personal choices and decisions.”

Prior to the Covid-19 outbreak, it was hypothesised it would take a global pandemic for people to start taking ME seriously. In the wake of the pandemic, as we started to see cases of Long Covid, there was initially more understanding about chronic illnesses. Due to the similarities between symptoms and how it’s recommended to manage them, people diagnosed with Long Covid were able to learn a lot from people who already had experience living with ME.

However, now WHO have declared Covid no longer constitutes a “global health emergency”, interest in both Long Covid and other long-term illnesses has already started to decline. While research into one illness may benefit the other, at the moment, there isn’t enough work being done regarding the treatment of either condition. There’s still a lot to learn about long-term conditions, especially when it comes to equal treatment in the workplace.

If you live with Long Covid or ME, we’d love to hear about how it affects you as a journalist. You can email sevenstanden@gmail.com if you’re interested in writing a guest blog, being interviewed, or just sharing your experiences.