With the excitement of the Covid vaccine’s arrival, it may be easy to forget and ignore those of us with “long Covid”, who are struggling to reclaim our previous, pre-viral lives and continue to live with debilitating symptoms. Even when the NHS has managed the herculean task of vaccinating the nation, Covid-19 and the new mutant variants of the virus will continue to circulate, leaving more people at risk of long Covid. Data from a King’s College London study in September suggested as many as 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.
I was acutely ill in March, though – like many people with long Covid – mine was defined as a “mild” case not requiring admission to hospital. Nine months on, I am seriously debilitated, with crashing post-exertional fatigue, often associated with chest pains. On bad days, my brain feels like it doesn’t want to function, even a conversation can be too much. I have no risk factors, I’m in my 50s, and have always been fit, but remain too unwell to work – ironically as a consultant in infectious diseases. Watching the pandemic unfold from the sidelines when I should have been working in the thick of it has only added to the frustration of my protracted illness.
My acute symptoms were over within 12 days, and I presumed I’d be back at work the following week. How wrong I was. In the following weeks I developed dramatic hair loss (similar to that post pregnancy) and continued to feel fatigued, usually falling asleep in the afternoon. I tried to steadily increase the amount I was exercising – but suddenly in mid-June I started to experience severe post-exertional fatigue. It could happen on a short walk or it could be while cooking dinner. It was completely unpredictable. When I felt really terrible, I would get chest pains, which I’d not had during my initial illness, and my body seems to need intense rest – and a lot of it. Graded exercise, an approach that has been used to manage patients with other post-viral fatigue, wasn’t working; in fact it seemed to be detrimental and could leave me floored for days. The one thing I realised early on was that pacing was vital.
For months it seemed there was no recognition of what was happening to so many of us, with numerous anecdotal reports of people being dismissed as anxious, depressed or histrionic. It felt as if we had been left in limbo, not followed up because we weren’t ill enough initially to be treated in hospital, but most without appropriate medical care and support for the duration of their illness. I am fortunate to have an excellent GP who has been extremely supportive throughout, but I could hear her frustration at the lack of anything concrete to offer or refer me to.
In May, with no resource to turn to, I set up a long Covid yoga group (I am also a yoga teacher) for others I knew who were similarly affected. I focused on particular exercises to help them relearn how to access their lungs and breathe again.
Much about this novel 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 to the compartmentalised specialist services that hospitals have become. But one thing has been evident for some time: this is not a straightforward post-viral syndrome, and requires a different approach.
The announcement in October of £10m funding for clinics offering help for long Covid couldn’t have come soon enough. And then the National Institute for Health and Care Excellence (Nice) updated guidance on “post-Covid syndrome” (as long Covid will now be known), including a definition, as well as plans for the 40 clinics across England.
These clinics will bring physicians and therapists together to “provide joined-up care for physical and mental health”, and will include physical, cognitive and psychological assessment.
I am yet to be seen by a physiotherapist, but who’d have thought the perching stool sourced by an occupational therapist for my elderly mother would become a necessity for me to cook dinner and brush my teeth?
There will also be allocated funding from the National Institute for Health Research for much-needed investigations into the mechanisms behind the long Covid symptoms. It is vital that long Covid is quantified and monitored in the same way we have been doing for hospital admissions and deaths. Additionally, there must be easy access to social services for people who need a care package because they can’t feed or wash themselves, as well as financial support and employment advice.
Crucially, like many multi-disciplinary teams for chronic conditions, there should be a single point of contact with a nurse specialist who coordinates different team members, and helps direct access to other services. A comprehensive one-stop shop is vital for people who can’t manage multiple visits to different specialists.
It may be enough for some that they are simply listened to, and it is understood that they are not fabricating their symptoms. We also need to cease classifying all cases that were not admitted to hospital as “mild”. Those experiencing long Covid have anything but a mild disease.
At last it seems that those of us with this debilitating condition are gaining the recognition and support we have been crying out for. We are only just acknowledging the potential of this virus to have devastating and life-changing consequences months after the acute symptoms. That at least is a good start.
When fit to work, Joanna Herman is a consultant in infectious diseases in London, and teaches at the London School of Hygiene & Tropical Medicine