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BEFORE the pandemic, Ellen would usually be found working as a nurse, taking her children to school or riding her horse. Now, as one of the estimated 1.1 million people in the UK living with long covid, she is beset with debilitating headaches, the latest in a string of symptoms she has experienced since developing the condition in March last year.

“It’s been a long, long road,” says Ellen, speaking to 91av during a visit to the UK’s first long covid clinic, at University College London Hospitals. Established by Melissa Heightman, a doctor at UCLH, it is now one of 83 such clinics across England (there are no clinics elsewhere in the UK) offering patients help from multidisciplinary teams.

For Ellen (who didn’t want to give her surname), the clinic has been a lifeline. “I just couldn’t do anything,” she says. Since contracting the coronavirus in 2020, Ellen has experienced severe fatigue that at times confines her to bed and leaves her having to crawl to the bathroom. While some symptoms have got better, several have got progressively worse. “It’s quite an up and down illness,” she says. “I’ve never been so unwell.”

Ellen is one of at least 120 people who will attend a long covid clinic here this week. Most visits involve blood tests and a couple of 30-minute sessions, one with a doctor and one with a therapist to discuss ways to manage symptoms. The clinic’s expertise ranges from respiratory medicine and cardiology to psychotherapy, physiotherapy and more.

Toby Hillman, consultant long covid physician at the clinic, says the current focus is on empowering people and helping them manage their symptoms. “There is no magic cure for long covid at the moment,” he says. Ellen says that when she came to the clinic with so many widespread and hard-to-understand symptoms, she felt great relief in the fact that “they just totally understood”.

“It’s a lot about reassurance, and listening to what your body needs,” says Rachel Lommerzheim, an occupational therapist at the clinic. “Rest is OK.”

She says there is a common misconception with people hit with fatigue after a covid-19 infection that if you do more, you will come out through the other side. In fact, “it’s the opposite of that”, she says.

Advice on managing fatigue includes “pacing” activities and getting patients to think of their energy as a finite budget.

The clinic also spends a lot of time aiding people experiencing breathlessness. Maddison Rigg, a physiotherapist, helps people consciously relearn the normally unconscious act of breathing. This can involve encouraging people to breathe through their nose rather than their mouth, and teaching them how to relax their upper chest and breathe with their diaphragm. Yoga has helped some patients in this regard, says Hillman.

Another person attending the clinic, Soha Dattani, a director at a global pharmaceutical company, says the occupational therapy has been “life-changing”.

The clinic helped her list her daily activities based on how much they exhaust her energy from green (listening to a podcast) to red (washing her hair). That structure has been hugely beneficial, she says.

The clinic also led her to take part in a breathing programme run by English National Opera (ENO). This trains participants in activities that support breathing control, such as doing exercises to help them breathe out more slowly than they breathe in. “The ENO thing has been phenomenal,” says Dattani.

“Anxiety will come if you are existing and not living. I am not living. I want my life back”

Progress can be slow and incremental, but just knowing it is going in the right direction seems to be helpful for those attending the clinic. Lommerzheim refers to one patient hit by fatigue whose progress can be marked by the fact that they can once again read a bedtime story to their children.

Mental toll

Alongside physical symptoms, long covid can also take a huge toll on mental health. “Anxiety will come if you are existing and not living,” says Dattani. “I am not living. I want my life back.” Psychological support is key to treatment, says Gráinne Fleming, a psychologist at the clinic.

One big psychological impact can be a loss of identity – suddenly you are off work and unable to engage with your family, says Fleming. On top of that she says there are two layers of uncertainty. The first is due to the setbacks many people experience. The second is due to an unpredictable prognosis because the condition is just so new.

Nevertheless, attendees cannot speak highly enough of the clinic. Anjali Chakraborty, a family doctor with long covid, recalls how her first call with Heightman was the first time a healthcare professional had taken her symptoms seriously. “Not dismissing me, saying: ‘There’s nothing wrong with you’,” she says. Dattani says she wouldn’t have managed the past year without the UCLH team. Ellen says the clinic has given her hope. “It’s hard,” she says. “But you have to remain hopeful.”