WWith the excitement of the arrival of the Covid vaccine, it can be easy to forget and ignore those of us with “prolonged Covid,” who are struggling to regain our previous, pre-viral lives and continue to live with debilitating symptoms. Even when the NHS has accomplished the herculean task of vaccinating the nation, Covid-19 and new mutant variants of the virus will continue to circulate, leaving more people at risk of prolonged Covid. Data from a study from King’s College London in September suggested that up to 60,000 people in the UK could be affected, but the latest statistics from the Office for National Statistics suggest it could be much higher.
However, I was seriously ill in March, like many people with prolonged Covid, mine was defined as a “mild” case that did not require admission to the hospital. Nine months later, I am seriously weakened, with post-exertional fatigue, often associated with chest pains. On bad days, my brain feels like it doesn’t want to function, even one conversation can be too much. I have no risk factors, I am over 50 years old and have always been in shape, but I am still very poor to work, ironically as an infectious disease consultant. Watching the pandemic unfold from the sidelines when I should have been working through it has only added to the frustration of my prolonged illness.
My acute symptoms disappeared in 12 days and I assumed that I would return to work the following week. How wrong I was. In the following weeks I developed dramatic hair loss (similar to what I had after pregnancy) and continued to feel fatigued, usually falling asleep in the afternoon. I tried to constantly increase the amount of exercise, but suddenly, in the middle of June, I started to experience severe fatigue after exertion. It could happen on a short walk or while preparing dinner. It was completely unpredictable. When I was feeling really terrible, I had chest pains, which I hadn’t had during my initial illness, and my body seems to need a lot of intense rest. Gradual exercise, an approach that has been used to treat patients with other types of post-viral fatigue, was not working; in fact, it seemed detrimental and could leave me stunned for days. The only thing I realized from the beginning was that rhythm was vital.
For months it seemed there was no recognition of what was happening to many of us, with numerous anecdotal reports of people being dismissed as anxious, depressed or histrionic. It felt like we were left in limbo, with no follow-up because initially we were not sick enough to be treated in the hospital, but mostly without proper medical care and support for the duration of their illness. I am fortunate to have an excellent GP who has been very supportive at all times, but I could hear her frustration at the lack of something specific to offer or recommend.
In May, with no resources to turn to, I set up a long Covid yoga group (I’m also a yoga teacher) for other people I met who were similarly affected. I focused on particular exercises to help them relearn how to access their lungs and breathe again.
Much about this new virus remains unknown and we are all learning as the pandemic continues to unfold. With its myriad symptoms and presentations, Covid represents a major challenge for the compartmentalized specialty services that hospitals have become. But one thing has been apparent for some time: this is not a straightforward post-viral syndrome, and it requires a different approach.
The announcement in October £ 10 million funding for clinics offering long-term Covid help it couldn’t have come soon enough. And then the National Institute of Excellence in Health and Care (Nice) updated orientation on ‘post-Covid syndrome’ (as Covid will now be known), including a definition, as well as plans for the 40 clinics in England.
These clinics It will bring together physicians and therapists to “provide joint care for physical and mental health,” and will include physical, cognitive and psychological evaluation.
I have yet to be seen by a physical therapist, but who would have thought that the stool that an occupational therapist provided for my elderly mother would become a necessity for me to cook dinner and brush my teeth?
Funding from the National Institute for Health Research will also be allocated for much-needed research into the mechanisms behind prolonged Covid symptoms. It is vital that the long Covid is quantified and controlled in the same way that we have been doing it for hospital admissions and deaths. In addition, there should be easy access to social services for people who need a care package because they cannot feed or wash themselves, as well as financial support and job counseling.
Fundamentally, like many multidisciplinary teams for chronic diseases, there should be a single point of contact with a specialist nurse who coordinates the different team members and helps direct access to other services. A comprehensive one-stop shop is vital for people who cannot manage multiple visits to different specialists.
For some, it may be enough to simply listen to them and understand that they are not manufacturing their symptoms. We must also stop classifying all cases that were not admitted to the hospital as “mild.” Those who experience prolonged Covid have anything but a mild illness.
It finally appears that those of us with this debilitating condition are gaining the recognition and support that we have been asking for. We are only recognizing the potential for this virus to have devastating and life-changing consequences months after acute symptoms. That at least is a good start.
When fit to work, Joanna Herman is an infectious disease consultant in London and teaches at the London School of Hygiene & Tropical Medicine
Digsmak is a news publisher with over 12 years of reporting experiance; and have published in many industry leading publications and news sites.