Stephanie deGiorgio, a 50-year-old GP and mother-of-two from Dover, appears to manage a demanding life, balancing part-time work with a role as a doctor trainer. However, what remains unseen is the immense toll long Covid has taken, requiring days of preparation and recovery for even a single day's work. Six years after contracting the virus in March 2020 from a patient, Stephanie has seen little improvement in her condition, which radically altered her once active life.

Initially experiencing two weeks of illness, Stephanie struggled back to work after four weeks, only for her symptoms to worsen. Beyond debilitating fatigue, she developed new problems, including a racing heart when climbing stairs and severe dizziness upon standing, often causing her to topple over. While she managed to continue working two days a week after ensuring her safety with colleagues, she had to abandon her online doctor training role due to the difficulty of prolonged computer use. Her life became a cycle of work and sleep, with rare outings necessitating three days of recovery in bed.

Today, Stephanie still suffers from dizziness and bone-deep fatigue that leaves her feeling utterly drained physically and mentally after even mild exertion. Her composure, however, truly crumbles when discussing the devastating impact of long Covid on her youngest daughter, Alice. Alice was just eight years old when she caught Covid from her mother. Once a vibrant child who loved dancing and gymnastics, Alice, now 14, experiences such severe dizziness that simply sitting up can be troublesome, alongside regular, agonising migraines. She spends 70 percent of her day in bed, a heartbreaking reality for Stephanie who yearns to see her daughter recover.

Long Covid is far from a forgotten problem; it is an ongoing epidemic. According to the Office for National Statistics, approximately two million people in the UK are currently living with long Covid, and these numbers continue to rise as the virus circulates globally. Professor Danny Altmann, an immunologist at Imperial College London, asserts that long Covid has not gone away. Professor Mark Faghy, a clinical exercise physiologist at Loughborough University, estimates that between 2.5 and 10 percent of individuals infected with Covid will develop long Covid, with the risk increasing with each reinfection. While a third of those affected may recover, another third will adapt their lives, and the remaining third will find their lives irrevocably shattered.

The symptoms of long Covid are diverse and debilitating, encompassing brain fog, breathlessness, joint and muscle pain, and, most commonly, post-exertion malaise. This phenomenon, described by Professor Faghy, involves a flare-up of symptoms following minimal physical, mental, or emotional activity. For some, simple tasks like walking upstairs, showering, or even the psychological strain of a conversation can trigger a relapse with after-effects lasting weeks. Postural tachycardia syndrome (PoTS), which affects both Stephanie and Alice, is also prevalent, causing a racing heartbeat and dizziness upon standing or even sitting up, thought to be related to the virus affecting the body's response to brain feedback.

While specialist Covid clinics, established in 2020, primarily offer management strategies like physiotherapy for breathlessness and fatigue, scientific understanding of the condition is advancing, leading to promising new treatments. One such treatment is the weight-loss drug tirzepatide (Mounjaro), which has shown anecdotal improvements in long Covid patients, possibly due to its anti-inflammatory properties. Furthermore, results are soon to be published from the first UK study testing an antiviral drug, remdesivir, as a long Covid treatment.

These breakthroughs hold potential not only for those with long Covid but also for hundreds of thousands suffering from 'long' symptoms of other viruses, including cold, flu, glandular fever, chickenpox, and even myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Studies indicate that around 50 percent of long Covid patients meet ME/CFS diagnostic criteria. Professor Altmann is leading the Rosetta Stone study to identify common mechanisms between long Covid and ME/CFS, utilizing blood, stool, and mouth swab samples. He believes long Covid is likely a specific instance of ME, with the trigger virus identified.

What distinguishes long Covid, as Professor Faghy notes, is its capacity to affect every cell in the body, with potentially catastrophic consequences. Research from 2024, published in Brain, Behavior and Immunity, revealed changes in the thickness of the frontal brain regions in long Covid patients with significant cognitive impairment. The rationale behind antiviral trials suggests that some symptoms might stem from viral residues lingering in reservoirs within the body, such as the gut. Professor Altmann explains that these reservoirs could stimulate ongoing inflammation and disrupt gut microbes, affecting the immune system, brain, and other organs, thereby contributing to persistent symptoms.

The UK trial, which commenced early last year, involved 73 long Covid patients receiving a five-day intravenous course of remdesivir. Professor Faghy, leading this trial, has only stated 'positive' signs, with full results expected this spring. Ryan Cawley, 37, a participant who had to quit his bank job and football due to long Covid, reported feeling 'breathing better, I can do more' after the treatment. However, Professor Faghy cautions that remdesivir may not work for everyone, as the primary drivers of symptoms vary from person to person, requiring different interventions for viral remnants, inflammation, or multiple co-existing causes.

Beyond new treatments, experts emphasize the importance of prevention, particularly convalescence post-Covid infection. Professor Altmann observes a common pattern where individuals who 'toughed it out'—ignoring symptoms and resuming normal activities like jogging—are among those who developed long Covid. Dr. Charles Shepherd, medical adviser for the ME Association and an ME sufferer for 40 years, echoes this, noting that many people with ME/CFS carried on with work and home responsibilities without adequate rest after a viral infection. He laments that convalescence, once a vital part of recovery, is rarely mentioned in modern medicine. Dr. Shepherd has contributed to NICE guidelines advising GPs to recommend periods of rest and convalescence for patients struggling to recover from infections or Covid.

For Stephanie, this advice comes too late, fueling intense anger at a healthcare system that has at times left her feeling 'ashamed to be part of the same profession.' While her GP was supportive, they lacked knowledge of long Covid, and a paediatrician questioned Alice's symptoms, despite her severe inability to sit up. Stephanie embarked on a nationwide search for help, eventually finding a private long Covid clinic in Liverpool in 2024. The relief of being heard brought her to tears. Alice was prescribed a lengthy list of medications, including fludrocortisone to help counter PoTS by boosting blood pressure.

Although Alice can now manage two hours of home tutoring weekly, having been too unwell for any schooling for 18 months, she can only leave the house about once a fortnight and still struggles to sit up for extended periods. Stephanie expresses profound worry for Alice's future, feeling her daughter is 'broken' and 'abandoned by the healthcare system.' She recounts instances of parents of children with long Covid being treated with suspicion or threatened with safeguarding measures for their children's inability to attend school. Stephanie herself takes bisoprolol and felodipine for her PoTS, which provides some relief but is 'nowhere near the life I had.'

Stephanie emphasizes that she shares her story not for sympathy, but out of anger at the profound lack of help. As a doctor who struggled to find support, she wonders how many families without medical knowledge are facing similar, insurmountable difficulties. Professor Altmann shares this concern, fearing a lack of political will to aid long Covid sufferers, noting his diminishing ability to communicate with government ministers and advisers on the issue.