HOPE AFTER LONG COVID by Jo Henwood

Since the outbreak of COVID-19 in 2020 there have been more than 23 million cases of the disease in the UK * . For most of us symptoms disappear within a month and life goes back to normal.

coronavirus.data.gov.uk

For some though, recovery takes much longer. Symptoms don’t go away, new ones develop. The struggle to hold down jobs, exercise or live a normal life, can become a challenge.

Figures released recently estimate that two million people are now living with a condition known as Long COVID * , a term Sarah Thwaites from Healthwatch reveals was coined by patients (read Sarah’s story of her own Long COVID journey below).

Dr Phil Cumberlidge is a member of Mersey Care’s newly created Long COVID service, designed to help people who still have symptoms more than three months after their initial infection. Founded in November 2021, the launch was ironically delayed when Phil himself contracted the virus.

Long COVID, like COVID-19 itself, is new, and Phil humbly admits to still learning. His experience in rheumatology and in chronic fatigue and fibromyalgia clinics helps, as some symptoms are similar. The most common he has encountered are fatigue, pain, brain fog, shortness of breath, inability to exercise and headaches – but the list is endless.

Phil had learned that colleagues were also seeing an increased incidence of POTS (Postural orthostatic tachycardia syndrome) – which can cause dizziness, rashes and clotting disorders. At his first clinic, more than half of patients displayed symptoms of POTS. The team now includes tests for POTS.

Doctors have many theories as to why people get Long COVID – viral persistence, where the virus remains in specific cells, clotting disorders, an abnormal autoimmune response, or MAST Cell Activation Syndrome when too much histamine is released. His colleague, matron Yvonne Marsden says many patients are in their 40s and 50s with a full working life still ahead.

Phil says: “We don’t really know why people get Long COVID and any of these theories could be right. Our focus is on rehabilitation and support. We aim to help patients regain a normal life.”

Dr Phill Cumberlidge

Medication currently offered includes antihistamine and anti-inflammatory treatments and blood thinners. But the clinic also offers physiotherapy, especially pulmonary rehabilitation, psychology services, and occupational therapy. People are also able to talk with a wellbeing advisor or be prescribed a social activity or course to improve their lifestyle.

Helen Reynolds is a social prescriber at The Life Rooms in Walton. She and her team give people a chance to discuss the wider implications of having Long COVID and help them find the right support.

“Someone with Long COVID may have been off work for some time, which can affect their ability to look after their families. This may lead to anxiety because of worry about the future. Other people we see have been unable to socialise and have lost their confidence.

“Many people say they leave us with a sense of hope. One person told me that having someone listen has made all the difference.”

The service may be new with much still to discover about Long COVID, but Phil Cumberlidge is emphatic. “We are here to make a real difference to people’s lives.”

SYMPTOMS OF LONG COVID

• fatigue

• breathlessness

• anxiety and depression

• palpitations

• chest pains

• joint or muscle pain

• not being able to think straight or focus (‘brain fog’)

• dizziness

• persistent cough

• loss of taste or sense of smell.

LONG COVID?

Government guidelines suggest that you may have Long COVID if you still have symptoms 12 weeks after your initial COVID infection, which are not caused by any other condition. If you think this is the case, contact your GP.

For more information visit yourcovidrecovery.nhs.uk

HAVE YOUR SAY

If you have had Long COVID, Healthwatch Liverpool want tohear from you. Take their survey at healthwatchliverpool.co.uk/long-covid-survey

[ONS 4 June 2022]

SARAH’S STORY

Sarah Thwaite from Healthwatch is a member of the Long COVID partnership. She’s also suffered with the condition. Sarah fell ill with COVID-19 in March 2020. Mysterious symptoms, extreme fatigue, and the end of her daily routine became the ‘norm’.

Read Sarah’s blog about her attempts to rebuild her life and strength at: liverpoolexpress.co.uk/tag/sarah-thwaites/