Five years on, Long Covid is still driving disability in a Dorset teenager
At 18, Molly Foden should be thinking about school, work and the next step into adult life. Instead, she is planning her days around dizziness, profound fatigue, pain and the unpredictable flares that have followed her since she first caught Covid in September 2021. Five years into the wider pandemic and nearly four years since her infection, her symptoms have not settled. They have intensified.
Her account is difficult to dismiss because it is so clinically familiar. Long Covid, also called post-Covid syndrome, is defined by symptoms that persist beyond 12 weeks, but the duration alone does not capture the burden. In children and young people, the illness can disrupt schooling, sport, family routines and basic mobility in ways that resemble other chronic multisystem conditions more than a simple post-viral recovery problem. Molly describes recurrent fevers, stomach symptoms, sickness, pain and a level of weakness that has at times left her relying on a wheelchair.
A multisystem illness that does not stay in one lane
The most striking feature of her story is how many organ systems appear to be involved. Fatigue sits alongside orthostatic symptoms, gastrointestinal dysfunction and pain, with diagnoses including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). Those labels matter because they reflect a pattern clinicians increasingly recognise in the sickest Long Covid patients: post-infectious immune and autonomic dysregulation, often accompanied by exercise intolerance, gastrointestinal disturbance and cognitive strain.
Molly’s pre-illness baseline makes the change more stark. She had been active, swam, played hockey and took part in surf lifesaving. Lifeguarding on Weymouth beach was a goal. Long Covid interrupted that trajectory and then kept narrowing it. She can manage only an hour or two of education a day, and even that comes with cost. The illness has closed off friendships, stripped away normal school life and forced a level of dependence that no teenager expects.
The biological plausibility is not hard to see. Persistent symptoms after SARS-CoV-2 infection may arise from immune activation, autonomic instability, endothelial dysfunction or residual inflammatory signaling. In practical terms, those pathways can produce the sort of fluctuating, whole-body illness that leaves a patient able to do almost nothing one day and only a little the next. For children, the result is not just physical debility. It is developmental derailment.
The closure of pediatric services left a gap in care
Molly was previously cared for by the Dorset Post Covid Syndrome Service, a dedicated paediatric Long Covid clinic. That service closed for children in November 2023, and her family says the care pathway has become far harder to navigate since then. NHS Dorset says there is no dedicated post-Covid service for children with Long Covid, and that referrals now move through local paediatric services, which may then direct patients onward to chronic fatigue services or other specialties depending on symptoms.
The system described here is fragmented by design rather than diagnosis. A child with overlapping fatigue, autonomic symptoms, gastrointestinal problems and pain may be too complex for a single specialty, yet not neatly triaged into any one clinic. Molly says she has been turned down by several NHS services because the illness does not fit a single box. Her mother Laura describes a healthcare structure that works in silos and does not communicate well enough to build a coherent plan.
In a condition like this, fragmentation is not an abstract administrative flaw. It changes the course of care. If one clinic focuses on fatigue while another excludes autonomic symptoms and a third does not manage gastrointestinal complaints, families are left assembling a treatment pathway themselves. The result is delay, uncertainty and, often, exhaustion for parents who become de facto care coordinators.
Private care fills the void, but at a steep cost
In the absence of comprehensive NHS support, some families are turning to private clinics. Molly has done the same, travelling to a private service in Liverpool because local options have not covered all of her symptoms. Other parents told the BBC they are considering clinics in Europe or have already spent large sums seeking help abroad. Those decisions are rarely made lightly. They are often the consequence of years without a functioning treatment pathway and the emotional pressure of watching a child deteriorate.
Off-label medicines are part of that picture. In Long Covid, as in other complex chronic conditions, doctors may prescribe approved drugs for different indications when the clinical evidence and the child’s individual needs justify it. That is not experimental medicine in the reckless sense. It is symptom-targeted practice in an area where no universally effective treatment exists. Some families say it has helped. Others are still searching.
What is missing is a consistent national approach. Parents and patient groups want more research, ring-fenced funding, clinician training and services that do not depend on where a child lives. The absence of those ingredients leaves families confronting the same problem again and again: a recognised diagnosis without a reliable route to recovery.
Research funding exists, but treatment access still lags
The Department of Health and Social Care says it recognises the “very real impact” of Long Covid and points to research funding, including the £1.9 million CLoCk study, jointly funded by the National Institute for Health and Care Research and the Medical Research Council. It also says local NHS-commissioned Long Covid services should support patients, and that where those services are unavailable, a GP can refer people according to clinical need.
Research is necessary, but families living with severe paediatric Long Covid need more than future answers. They need present-tense care. That includes better recognition of symptom clusters, practical rehabilitation plans, mental health support, school accommodations and specialty referral pathways that can handle complex multisystem disease without sending families back to square one.
Molly has still managed to achieve two GCSEs and says she wants to become a vet one day. She is also speaking out for those who cannot. Her message is simple and clinically uncomfortable: some children are still stuck in bed, still worsening, and still moving through a health system that can diagnose the problem but cannot consistently treat it. The unanswered question is not whether these cases are real. It is how long families will have to wait for a service model that matches the severity of the illness.