Urgent Funding Needed for Long Covid

Covid-19

With an anticipated surge of people with long Covid, health system funding and resourcing is needed fast to ensure those who experience it are supported, argue Dr Sarah Rhodes and Dr Margot Skinner
Epidemiology of long COVID

Post Covid-19 condition, commonly known as long Covid, is defined by the World Health Organisation as a condition that occurs in individuals with a history of probable or confirmed SARS CoV-2 infection. It usually occurs within three months from the onset of Covid-19, with symptoms that last for at least two months and cannot be explained by an alternative diagnosis.

Current evidence suggests that for most people with long Covid the time to recovery is greater than 35 weeks. Recovery tends to be episodic and unpredictable with periods of relapse.

Long Covid can develop in anyone who has had Covid-19, from those who were hospitalised in intensive care through to those with a very mild form of the acute infection. A recent study from the UK suggests the spectrum of symptoms is just as high in those who never present to hospital.

The global prevalence of long Covid is difficult to establish as there are some questions about the accuracy of diagnosis as well as a lack of reporting. Information from the UK estimates 33 percent of those with the acute infection go on to develop persistent symptoms.

In Aotearoa New Zealand there are more than 9,000 people who have or have had Covid-19, which means more than 3,000 may experience persistent symptoms. This number will continue to rise.

Although classified as a single condition, long Covid affects multiple body systems including the respiratory, cardiovascular, neurological, gastrointestinal, and musculoskeletal systems. People present with different symptoms. More than 200 symptoms have been reported to be associated with long Covid.

Because of the diverse range of presentations, and a relative lack of knowledge about long Covid, it is not always easily diagnosed and may be overlooked. In some countries, people with long Covid have reported frustration about not being taken seriously by health providers and have recounted barriers to accessing appropriate treatment and support.

It is vital that Aotearoa New Zealand learns from experiences overseas and gets it right. Health system funding and resourcing is urgently required to ensure that appropriate care  and multi-disciplinary support can be implemented to manage the anticipated surge in people with long Covid. Equitable access to healthcare is of central importance.

Clinical manifestations – key symptoms

One of the most common symptoms of long Covid is extreme fatigue; a feeling of complete exhaustion that prevents an individual from managing their usual daily activities. Physical and mental tasks can be disproportionately tiring compared with life before Covid-19.

Fatigue is often accompanied by ‘brain fog’ or a lack of mental clarity with disruption to memory and difficulty concentrating. Simple mental tasks can become immensely challenging to complete.

‘Post exertional malaise’ occurs where other symptoms, such as fatigue and pain, are made worse by either physical or mental exertion. This may be immediate or can occur one to three days later, which makes it unpredictable and difficult to manage.

Postural orthostatic tachycardia syndrome or ‘POTS’ happens where the body’s heart rate increases dramatically, with a change in posture from lying down to sitting or standing up, and results in feelings of dizziness or fainting. It can be frightening and disabling.

Breathlessness or dysfunctional breathing patterns relate to an abnormal change in breathing, often caused by breathing in excess of the body’s requirements. The resulting chemical imbalance can cause disruption to other body systems and a wide range of additional symptoms.

Cardiovascular manifestations such as inflammation of the heart muscle and inflammatory micro clots can also contribute to fatigue, pain and functional impairment.

What causes long Covid? Possible mechanisms, including viral persistence and an overactive immune system, are still being investigated.

Treatment

Research is underway into the most effective ways to treat long Covid. At present, most treatment options are focused on symptom management. Specific health pathways are not yet established. Due to the array of different conditions that make up long Covid, the solution that works for one person may not work for another. For this reason, it is important that each person is assessed individually by a health professional.

Fatigue, breathlessness, and post exertional malaise can be largely self-managed by pacing activity, or balancing activity, rest and relaxation to ensure the individual is able to manage key tasks. Guidance by a physiotherapist or occupational therapist is often helpful. Management of other symptoms may require a broader range of health professionals, including cardiologists, respiratory physicians and neurologists.

Role of Physiotherapy

Physiotherapists can support people with symptoms of long Covid by helping them to understand the importance of limiting activity so it does not impair functioning. For example, in patients with post exertional malaise, too much physical or cognitive effort can worsen symptoms.

Physiotherapists can help people to pace, plan and prioritise to keep within their energy reserves and help manage fatigue. Physiotherapists are also educated in breathing retraining to manage breathlessness, by advising on positioning and strategies to reduce breathlessness, as well as identifying and managing any abnormal changes in breathing pattern that may have developed.

Return to work

Studies suggest long Covid has a substantial impact on people’s employment and lifestyle, with research showing the majority are still unable to work after three months and many are unable to resume fulltime work and previous physical activity levels even after 12 months.

Vaccination

Although being vaccinated against Covid-19 does not prevent all people from catching the virus or from developing persistent symptoms, the evidence suggests that being vaccinated does have a protective effect, with long Covid symptoms likely to be milder and less debilitating.

Our key messages

• Get vaccinated to reduce your risk and the likely impact of long Covid.
• There is a clear need for Ministry of Health funding to provide clear and equitable access to health pathways and long Covid clinics.
• Health professionals need to collaborate in the development of a multi-professional long Covid management programme, which should include a Covid helpline.
• Those with experience of long Covid are the experts and can play a vital role in working with health professionals to advise on symptom management.

*The authors declare they have no conflicts of interest.