Long COVID can be debilitating, and thus, further research and support for those living with the condition are urgently needed. Yanto Evans and Michael Natt from Long Covid Support discuss the unmet medical needs and strategies to improve understanding and care for Long COVID patients
Ask those significantly impacted by long COVID to sum up their illness and a common theme emerges. Devastation. Torture. Misery. Pain. Hellish.
The National Institute for Health and Care Excellence (NICE) – the public body governing the treatment of illnesses within the NHS – take a more clinical stance, defining 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. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body’.
This distinctly broad definition, last updated over two years ago despite a deluge of recent research findings, fails to capture the depth of physical, emotional, and socioeconomic turmoil that long COVID patients endure, some of whom are now entering their fifth year of illness.
The presentation of long COVID symptoms is wide ranging and can affect anyone regardless of age, gender, health status, vaccinations, or prior exposure to COVID. Those at the more severe end are left bed-bound and dependent on care. This includes young children missing out on their all-important formative years. A large body of scientific evidence has identified over 200 possible symptoms associated with long COVID. These symptoms present across all major organs, including the heart, lungs, brain, gut, and nervous system.
Some patients do recover with time and rest, but many don’t. They’re left to manage ongoing debilitating symptoms with no assurance they will ever recover. Frequently, patients are forced to push themselves to return to their normal lives, only to relapse. The rollercoaster nature of their illness not only presents a huge physical challenge but takes a devastating toll on mental health. Some long COVID patients have sadly taken their own lives.
Presently, there are no diagnostic tests for long COVID. Of the tests currently available, most return ‘normal’. This, together with the wide range of symptoms, means that getting any sort of meaningful diagnosis is challenging to say the least. The lack of diagnostic evidence serves to reinforce the prejudice many long COVID patients face from those in wider society who insist that COVID-19 is merely a ‘cold or flu’. Like other post-viral illnesses (eg. ME/CFS), patients encounter suspicion and gaslighting at the hands of health care professionals who suggest they’re anxious, depressed or even lazy. This sense of disbelief may extend to loved ones and employers who rely on the expertise of doctors. This can lead to breakdowns in relationships and patients losing jobs. Families come under huge pressure where healthy dependents are suddenly thrust into the dual role of breadwinner and carer.
Alongside a lack of tests, there is no consensus on effective treatment. In some instances, patients are prescribed exercise which can prove harmful to some. Among the potential causes of long COVID are viral persistence, clotting abnormalities, immune dysfunction, and inflammation. There are drugs readily available for these conditions. However, a current lack of clinical trials to ascertain the efficacy of these treatments in long COVID patients means gaining access to them is nigh on impossible. Instead, patients are forced to seek out experimental therapies at their own expense. In the absence of a cure or treatment, any hope of recovery is dependent on time, rest, and lots of patience.
In England, patients can be referred through primary care (GPs) to one of almost 100 long COVID clinics. However, the provision of these services is something of a postcode lottery and their remit is severely limited. Rather than investigate underlying pathology and treating it at source, in clinics, treatments centre around physiotherapy, occupational therapy and counselling. While there is a place for them, these interventions alone are insufficient to completely rehabilitate patients.
Governments suggest the pandemic is over and that normal service should resume. Recently, the UK Government withdrew funding for its RECOVERY programme. Meanwhile, long COVID cases continue to rise. In March 2023, The Office for National Statistics estimated there were 1.9 million people living with long COVID in the UK. This equates to almost 3% of the population. Given the present lack of monitoring, it’s difficult to calculate the current scale of long COVID. What is evident however is that the levels of long-term sick have been rising since early 2020, are at record levels and continue to rise. Labour shortages are commonly reported particularly in healthcare, education, and hospitality. Front-line workers intend to bring legal action against their employers for failing to provide the necessary safeguards, amplifying calls for COVID to be considered an occupational disease. If this trend continues, the benefits system will be increasingly overwhelmed. Productivity will plummet. The impact on the economy will be significant. The estimated annual cost to the UK economy currently stands at £1.5bn.
So, what can be done?
Research and clinical trials together with meaningful patient involvement are essential. Further effort should be devoted to educating healthcare workers about post-viral illnesses. A public messaging campaign warning of the dangers of long COVID is long overdue.
Reinfection with COVID can cause severe and long-lasting relapses in those who either have long COVID or have since recovered. Inexplicably, patients with long COVID aren’t considered clinically vulnerable by the NHS, and therefore cannot access antivirals or vaccines that could afford some protection.
Prevention is key. Governments should consider the introduction of Clean Air Initiatives to guard against airborne viruses such as COVID. This could include HEPA filtration, CO2 monitoring, adequate ventilation and the wearing of FFP3 masks in specific settings such as healthcare.
Likewise, employers must take necessary steps to prevent the spread of COVID-19 in the workplace encouraging those who are ill to stay home. Greater support should be offered to those employees affected by long COVID (including carers) to reintegrate them into the workforce.
It is imperative that governments monitor both COVID and long COVID in some form or other. With no diagnostic test available, a registration service should be considered to help understand the prevalence of the illness to help inform future policies.
The future remains uncertain for many long COVID patients. As governments and health professionals slowly catch up, patients have no choice but to wait it out. As Churchill once said:
“If you’re going through hell, keep going”.
Long Covid Support
www.longcovid.org
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