Why there is finally cause for hope for those of us with long-term COVID
It has been two years since I first wrote about extended Covid, which was inspired by my absolute surprise and annoyance at the inadequate assistance that individuals like me were receiving.
Since then, a lot has happened, including the expansion of clinics, more research funding, and ongoing large-scale trials. But the numbers are still startling: according to the most recent ONS data, 2.2 million people in the UK—or 3.4% of the total population—are thought to have long-term COVID, and nearly 600,000 of them—or 27%——like me——have had it for longer than two years. 17% of us have difficulty with routine everyday tasks like cooking and hanging up the laundry, and the majority of us have noticed a considerable influence on our day-to-day activities.
Numerous people are still unable to find employment. According to estimates from the Institute for Fiscal Studies, 110,000 people missed work at any given moment, and one in ten gave up their jobs while they were ill. According to recently released information from NHS trusts in England, extended Covid last year cost employers a million working days.
My Covid arrived in March 2020. My condition was modest; I wasn’t hospitalized, and I didn’t have any risk indicators for a serious illness. However, 33 months later, I am still unable to resume my position as an infectious diseases consultant in the NHS. Ironically, despite the fact that the NHS is currently experiencing a crisis, a disproportionately large share of its employees has been absent due to illness for an extended period of time, according to ONS data. And we will simply increase the pressure on our already-collapsing health system.
Appropriate care is still determined by postcode. While some people go to well-organized, multidisciplinary clinics, others go to community-based physiotherapy clinics or nothing at all. Although my local teaching hospital in London still lacks a clinic, finally GPs established a community clinic that only sees patients remotely and directs them to the proper online resources. I don’t anticipate any miracles because there is no cure for this illness, but I had anticipated receiving more assistance than I have. I haven’t visited a specialty clinic in all this time; my GP has been the only one to examine me. And I’m not the only person having this experience.
Although the majority of us are gradually getting better, we are still riding the terrible rollercoaster. Even if they are laborious, planning and pace are nonetheless essential to my everyday life. But despite this, I, like many others, lament my past existence since it seems as though we are still trapped in a time warp, unable to function professionally or socially as we once could. We have been left behind as everyone else has recovered from the pandemic, and many people are striving to be recognized for the negative effects this illness has had on their daily and professional lives.
It is not clear whether long Covid is covered by the Equality Act in this country, unlike the US where it is recognized as a disability. This is due to problems with definition and resistance that I personally encountered during a three-hour speed awareness workshop. My request for the course to be spread over two days was denied. It has been challenging to get official acknowledgement of how severely the sickness has affected society. The Equality and Human Rights Commission (EHRC) stated in May that “long Covid” should not be considered a disability in the absence of case law or scientific consensus.” This appears to be a direct violation of the law regarding disabilities.
The all-party parliamentary group on coronavirus is chaired by Liberal Democrat MP Layla Moran. In 2021, she began pushing for long Covid to be recognized as an occupational condition, although this has also been riddled with difficulty and debate.
There is however hope. The World Health Organization (WHO) urged nations to invest in the three Rs—recognition, research, and rehabilitation—in a long Covid that was placed on its agenda in September. In 2020 and 2021, an anticipated 17 million persons in the WHO’s European area alone had lengthy Covid. However, it appears that the UK has disregarded its proclamation that “no patient should be left alone or have to fight through a system that is not prepared to, or not capable of, recognising this profoundly debilitating affliction.”
Apps that help patients assess and manage their symptoms so they can adopt a successful pacing strategy are one encouraging recent development. I’ve wished my body had an early warning system to prevent overdoing things ever since I became ill. With this illness, you don’t realize you’ve done too much until the repercussions, which could linger for days, are already here. An alarm system is required to prevent you from reaching that point.
We now know a lot more about the condition than we did as 2023 draws near. Repurposed medications are being tested, and non-pharmaceutical interventions are gaining popularity. Research should start to produce some results next year that could help with diagnosis and focused treatment. The Breathe program of the English National Opera, which has treated nearly 2,000 long-term Covid patients throughout England, was the subject of a study that was published in the Lancet.
Weekly singing and breathing exercises helped individuals feel better overall, especially about their shortness. One of my dreams came true three weeks ago when 55 of us from the program gathered in person for the first time and sang on the stage of the London Coliseum, some of us in wheelchairs and others having difficulty walking, but we were all there with a purpose. Both the ENO Breathe team and I found it to be extraordinarily moving because they face funding reductions in April. For many people, reaching the Coliseum was an enormous accomplishment.
On the other hand, long-term Covid patients are being targeted on social media for other unproven, non-pharmacological therapies, some of which are expensive and contentious, such blood purification (apheresis). You’ll be open to trying just about anything after being ill for almost three years.
Long Covid is still one of the main public health issues that the government has neglected to handle in a timely and efficient manner as we continue to recover from this pandemic. Our authorities still do not fully comprehend the problem’s huge scope nearly three years later.