While most Covid-19 patients report having symptoms for 3-4 weeks, for 10-20% of patients, these can persist for months. This condition has been called post-Covid-19 syndrome, or, more commonly, “Long Covid”, and is emerging as an unforeseen and serious consequence of the pandemic.
The Long Covid condition is not exclusive to older, more vulnerable patients. In fact, younger, more fit and healthy people who experienced milder symptoms have reported feeling unwell for weeks and even months following infection.
Such patients, who refer to themselves as “long-haulers”, have notoriously faced disbelief from medical professionals due to the lack of an obvious pathological diagnosis. They are also commonly faced with disbelief from friends, as they do not conform to the typical framework of the disease.
Long Covid, to a large extent, has also been kept out of the media and generally largely neglected. This has led to the formation of an online community: a Long Covid support group on Facebook that has over 30,000 members from around the world. Members of this digital support group have reported feeling unseen, unheard, and desperate, and have used this platform as a cry for help.
Recognising this as an important issue, the World Innovation Summit for Health (WISH) – Qatar Foundation’s global health initiative – organised a session titled ‘Are We Taking Long Covid Seriously Enough?’ as part of 2020’s virtual WISH summit late last year.
The session, hosted by WISH’s Director of Partnerships and Outreach Nick Bradshaw, gathered infectious disease expert and Long Covid patient Dr. Paul Garner, academics, and other Long Covid sufferers, as well as members of the general public.
Together, they formed a jury of 12 people who discussed the effect Long Covid has on its sufferers and the lack of attention it has received from both the media and medical and health professionals.
It also looked at how to effectively raise awareness about the condition, the best way of communicating the health messages surrounding it, and how to move forward.
“When we decided to include a discussion about Long Covid as part of WISH 2020, it was clear that we needed to include people who could provide the patient perspective,” Bradshaw said.
“What’s been interesting about the Long Covid Support Group on Facebook is how those involved in the group have ended up not only offering a place to find support and share information for fellow sufferers, but have also taken the lead in advocating for the healthcare profession to recognise that Covid-19 isn’t only an acute illness, but can be a chronic one too,” he added.
Although things are starting to change and Long Covid is becoming more recognised as a real and serious condition, there is still a lot that remains to be done.
The medical and scientific community recently launched several multi-year studies – scientifically referred to as longitudinal studies – aimed at identifying how common Long Covid is, what the symptoms are, and who is most at risk of contracting it.
These studies will also look at how long symptoms remain, whether they are eventually resolved, and at what stage affected patients return to their normal state of health.
This will provide guidance to healthcare professionals, and give them the evidence base and support needed to provide a more tailored approach to care.
Among the common symptoms of Long Covid are fatigue, shortness of breath, persistent cough, joint pain, chest pain, according to the Centers for Disease Control and Prevention (CDC).
Other symptoms include difficulty with concentration and thinking- commonly referred to as “brain fog”, depression, muscle pain, headache, intermittent fever and heart palpitations.
However, some more severe and serious complications are less common, but have also been reported.
These types of complications affect entire organ systems in the body, such as the cardiovascular system and respiratory system. Such organ damage may further increase the risk of long-term health problems; for instance, damage to the heart muscle may increase the risk of heart failure or other complications of the heart in the future.
Damage to the alveoli, microscopic air sacs in the lungs that are responsible for gas exchange can result in long-term breathing problems. Additionally, damage to the brain as a result of Covid-19 can cause strokes and seizures and that may in turn increase the risk of developing Parkinson’s disease and Alzheimer’s.
Early research findings from an ongoing study that assesses the long-term impact of Covid-19 on organ health amongst ‘low-risk’ patients with long-term symptoms have shown that approximately 70% of the patients screened have impairments in one or multiple organs – such as the lungs, heart, liver and pancreas – up to four months after they first felt ill.
These long-lasting debilitating symptoms make the reduction of the spread of the disease all the more vital.
The best way to prevent Covid-19 – and, as a result, Long Covid – is for young people and adults to continue to wear masks in public places, keep the recommended distance away from others, and wash their hands and sanitise frequently. Crowds and large gatherings should remain off-limits, and it is recommended to avoid poorly ventilated spaces.
Moving forward, it is crucial that we, as a community, help to spread the word and raise awareness on Long Covid and its effects on not only the vulnerable, but also the young, fit, and healthy.
Doing so will ensure that “long-haulers” receive the help and support they need and deserve from clinicians, caregivers, family and friends.
On a national and global scale, it is vital that we continue to invest in research funding on Long Covid studies, and that evidence-based policy translation is executed in a timely manner to improve healthcare outcomes for a group of patients who have been otherwise neglected.
Maha El Akoum, MPH, is a public health professional currently working as Head of Content at World Innovation Summit for Health [WISH].