What has changed, what’s now known about long COVID?

MORE than two million people in the UK say they have symptoms of longCOVID, according to the latest Office for National Statistics (ONS) survey with many long Covid patients now reporting Omicron was their first infection – and I’m one of them.But almost three years into the pandemic there is still a struggle to be seen by specialist clinics, which are hampered by a lack of resources and research. This is why there is the question: Has the condition changed at all, and have treatments started to progress?

   As symptoms during or after infection that continue for more than 12 weeks and are not explained by an alternative diagnosis, an estimated 1.2m of those who answered the ONS survey reported at least one such symptom continuing for more than 12 weeks – health issues that they didn’t think could be explained by anything else. It’s easy to assume that new cases of long Covid have significantly decreased, given recent research suggesting the risk of developing long Covid from the Omicron variant is lower. However, the sheer scale of cases over the past year has resulted in more than a third of people with long Covid acquiring it during the Omicron wave, according to the ONS leading to the question: What are the symptoms of long Covid?

   The symptoms reported by newer long Covid sufferers are still broadly similar: weakness or tiredness, difficulty concentrating, shortness of breath and muscle aches are mentioned most often. What might be surprising is that for many of these people the severity of their long Covid has not diminished. I found it difficult to come back to my work as a television producer after long Covid, and spent four months on a phased return after going through a mild Covid infection myself in January, two weeks after returning to work I rapidly went downhill and ended up taking a month off work being closely monitored by doctors and hospital specialists.

   Over the following months I spent most days in bed due to fatigue and severe joint pain, and struggled to walk more than a short distance without chest pain. I experienced significant cognitive issues with memory, speech and hearing, developed pleurisy, and even a reactivated Epstein-Barr virus responsible for my long-forgotten bout of glandular fever more than a decade ago. I was officially diagnosed with long Covid after 12 weeks and had gone from balancing a demanding job going into the office throughout the pandemic alongside exercise, hobbies and nights out to requiring help with basic tasks and rarely leaving my bedroom.It’s now been 10 months, and I still experience chronic pain, brain fog, and muscle twitching and I struggle to do simple housework or activities even after taking a prescribed cocktail of painkillers and supplements, because patients like me are usually referred to post-Covid assessment clinics after experiencing symptoms for 12 weeks – however, waiting times have not improved much within the past year thereby, in a way, lending credence to latest NHS England figures showing 33 per cent of Londoners given an initial assessment had to wait 15 weeks or more from the time of their referral, compared to 39 per cent from a similar period in 2021.

   Also, according to the Royal College of Nursing, Long Covid treatment across NHS services in England still varies hugely too, with some services treating it as a physical condition but others as psychological. They may be correct because, because after waiting more than 19 weeks I was finally assessed in August but was left feeling hopeless, with a one-hour Zoom call offering diet and pain management advice – but no further investigations, referrals or treatment. Yet despite this, research efforts are gathering pace and one long Covid clinic in central London is taking part in a study to gain a better understanding of how health systems respond to people living with the illness, and its effects showing that there is no one theory as to what causes long Covid.

   Thanks to the ongoing research her team are now increasingly recognising the patterns of illness and they’re not a surprise to doctors.

   Similarly, the online support group I belong to has more than 56,000 members and one topic that leads discussions is wider acceptance of long Covid. Many people report falling out with friends, family and even their marriages breaking down due to a lack of support or understanding about their illness. Some, including me, have also been targeted by strangers on public transport because they are taking measures to protect themselves from re-infection by wearing a mask with popular view supporting that lack of compassion for the condition has also made her life even more difficult. For the two million people in the UK estimated to be dealing with the life-changing effects of the condition, they too wish that it was over – but are relying on new research, improved treatment, and kindness from others until that time comes.

Dr. Liz Jackson is a [public health consultant with British Broadcasting Corporation (BBC).