2020 has seen the world look on in horror as COVID-19 has disabled everyday life in extreme ways. As the months have gone by, cases and deaths have lessened thankfully but there is now a growing group of people who are worried about whether their lives will ever return to normality who are dubbed the ‘long-haulers.’
Scientists and medics alike are struggling to get to grips with what epidemiologist Dr Nisreen Alwan describes as fluctuating and debilitating symptoms several months after her mild illness. Professor Paul Garner, from the Liverpool School of Tropical Medicine, has been very vocal about his experience of his distressing ongoing symptoms which include intense fatigue, mood swings, muscle and joint pains, headaches and brain fog.
Members of both the Lyme disease and ME communities are drawing parallels between what is unfolding with COVID-19 and their own experiences. Some COVID-19 patients are not bouncing back quickly after a viral infection and in the case of Lyme disease patients, a bacterial infection.
There are already anecdotal reports of COVID-19 patients suffering in similar ways to Dr Nisreen Alwan and Professor Paul Garner who are being told by their doctors that they are “focusing too much on their symptoms”, they are “suffering with anxiety” and they “should get some exercise.” Some have been offered antidepressants or referrals to mental health services. Members of the Lyme disease community, who haven’t recovered after the standard prescribed course of antibiotics following a tick bite, and members of the ME community, who didn’t recover from their initial illnesses are silently screaming; “Please listen to these people, please don’t condemn them to a life of chronic illness and doctors telling them it’s all in their heads before dismissing them as heart-sink patients.”
For the Lyme disease community, watching the complexities associated with developing accurate COVID-19 tests unfold in the media, it is impossible not to shout, “why is this not acknowledged more fully when investigating other illnesses?”
In the words again of Professor Paul Garner, ‘testing can rule a condition in, but it doesn’t rule it out.’
How many patients struggling with tick-borne illness have longed for a doctor to say that to them?
He also states that one of the most distressing aspects of being a COVID-19 long-hauler is the dismissive attitude of some doctors. As a highly respected medical professional, this must be a horrifying insight into his own profession.
I was a senior nurse when I became very unwell with what was initially diagnosed as ME but with what turned out to be an untreated tick-borne illness. One of the most hurtful things I encountered was one minute being a respected health professional and then being made to feel as if I was somebody who was exaggerating or making up my distressing symptoms simply because people in my profession could not find out what was wrong with me. I found it very psychologically damaging on top of physically becoming a shell of my former healthy, happy, busy self. The questioning looks still haunt me when I was being asked by doctors, “are you anxious about something?” or “are you depressed?” My response was often, “how would you feel in my situation? Thrilled to bits?”
Trish Greenhalgh, Professor of Primary Care at Oxford University and colleagues suggest that as so much is unknown about the cause of prolonged COVID-19, a doctor’s role is to be, ‘a key witness, honouring the story of the patient whose protracted recovery is unexpected, alarming and does not make sense.’ This I feel is the very sentiment that the Lyme and ME communities will cheer out loud for. Please listen to these ‘long-haulers’, don’t dismiss their symptoms because their “blood results are normal” or they “don’t look ill”. Maybe one of the few positives to come out of COVID-19 is that culture that has built up around misunderstood illnesses can at last start to be broken down.
Julia Knight is the Press Manager of Lyme Disease UK and was a Specialist Community Nurse in Paediatrics until Lyme disease ended her career.