Successful, patient-driven Long Covid advocacy and research is, I argue,
a huge opportunity to strengthening patient voices across different
disciplines, patient communities, and biomedical fields.
SARS-CoV-2 is now recognized as a virus associated with high mortality
and morbidity [1]. As of 31 October 2021, Covid-19 has caused 5
million official deaths worldwide. Many more people, however, never
fully recovered from the initial infection and now suffer from
persistent ill health, including organ impairment [2], neurological
damage [3], endothelial dysfunction [4] and immune system
dysfunction [5].
Long Covid has, therefore, emerged as a major clinical challenge across
the pandemic [6]. In the UK alone, over one million people are
reported to suffer from long-term symptoms and sequelae following
SARS-CoV-2 infection. This is shown by data from the ONS (Office for
National Statistics) [7] and the REACT-2 study [8]. Data from
other countries remain more sparse because of less refined collection
methods, but are of severe concern. A paper published in the New England
Journal of Medicine in August 2021 suggested that 15 million people
might have Long Covid in the US [9].
Already in early 2020, those with Long Covid and from other chronic
illness communities, started to raise the alarm on the catastrophic
effects of unmitigated SARS-CoV-2 spread, and the enormous disease
burden to come [10]. In an Open Letter published in September 2020,
my co-authors and I defined the costs of Long Covid as “unfathomable”
[11]. In a New York Times Opinion from March 2021, Lowenstein and
Davis described the Covid-19 pandemic as “one of the most disabling
events in modern history” [12].
Long Covid and cognate term Long Haul Covid were coined and brought to
wide attention in the first pandemic months by a grassroots,
international, patient-led movement of people, to which I participated
actively [13].
Long Covid was identified, named, and defined collectively by patients.
Intense mobilization via social and other media successfully challenged
early official guidelines, which posed recovery from Covid-19 within
2–6 weeks from symptom onset.
The definition of Long Covid as a disease entity took place via
different means. Crucial was vast engagement of patients with public
discussion of prolonged symptoms via patient-made hashtags. Equally
important was patient engagement with the growing scientific literature
on Covid-19, and the sharing of one’s objective clinical data across
different platforms (e.g. hypoxemia, abnormal cardiac function and
raised ddmer levels beyond the acute phase of Covid-19). Innovative
forms of data collection and analysis were developed in support groups
and via social media. Healthcare professionals and scientists with Long
Covid participated actively in knowledge production. Interdisciplinary
participation of patient researchers with backgrounds in linguistics,
history etc. was crucial to building a new language to define a disease.
The term Long Covid is now widely used in the scientific literature, as
well as by policy makers, the media, and major health bodies [14].
As a patient-made term, and movement, that gained wide recognition in
just a few months, Long Covid has prompted significant changes in how
scientific knowledge is built [15]. Such changes will be hopefully
durable. Those with Long Covid have produced ground-breaking research,
advocacy, and science communication. This often happened in advance of
conventional medicine and contributed to change how Covid-19 is
understood and communicated to the public [16].
As physician-scientist Z. Al-Aly wrote in a Guardian Opinion in October
2021 “In a short few months [these patients-advocates-researchers]
created a formidable patient-led advocacy and research movement that
changed the arc of medical history” [17].
The experience of Long Covid is, therefore, crucial in medicine because
it highlights the power and knowledge that lie within a patient
community. Those with Long Covid must be recognized as experts on
SARS-CoV-2 infection symptoms and sequelae in their own right.
Long Covid helped to widen the range of actors who are involved in
public health decision-making, as well as in the matter of defining
diseases, symptoms, and concepts of disability. For example, patient-led
advocacy was instrumental to the landmark World Health Organization
meeting of 21 August 2020, which publicly recognized Long Covid
[18]. Patient researchers have also contributed to writing or
reviewing guidelines at the national and international level.
I hope, therefore, that the experience of Long Covid will further
galvanize different patient communities to strongly engage in grassroots
activism and policy making. This is a delicate point, however, that need
to be addressed with sensitivity. The onus of advocacy cannot be on
patients alone, especially in a pandemic world with faltering economies
and healthcare systems. Policy makers and new advocates, or allies, need
to be aware of the long–term struggles, and successes, of the
disability community across space and time.
At the same time, patient expertise must be incorporated into
decision-making on matters of health and healthcare at the highest
level.
Long Covid is contributing to a paradigm shift in our awareness and
understanding of viral-onset diseases. It is encouraging that new
awareness on the long-term effects of viral and other infections is
bringing more visibility to (post) infection conditions. This must
result into targeted funding, high-quality biomedical research,
diagnostic, treatment, and support. I highlight again conditions such as
myalgic encephalomyelitis/ chronic fatigue syndrome, dysautonomia,
post-sepsis syndrome, and post-infectious vasculitis. These remain
poorly researched, communicated to stakeholders, and clinically treated.
Virus-induced lung diseases are another widespread clinical challenge
[19] which deserve further consideration as long-term sequelae of
Covid-19.
I welcome growing awareness of other poorly researched conditions, such
as fibromyalgia and connective tissue disorders. Notable is raising
interest in their possible autoimmune and/or (post) infection component,
which remain to be further characterized [20]. I also encourage
engagement with expertise on autoimmune diseases, such as lupus (SLE),
and thrombotic or inflammatory conditions. This is because of mounting
evidence of autoimmunity, coagulopathy and inflammatory processes in
Covid-19 [21] and Long Covid [22].
We need to address (post) infection diseases as complex clinical
entities, which would benefit from an interdisciplinary biomedical
approach for optimal understanding: for example, from cardiology,
haematology, immunology etc. Knowledge building by patients and patient
researchers would be crucial, too. Strategies that have proven key to
grassroots Long Covid advocacy in the digital era could be further
explored and expanded.
Some of the conditions I mentioned above, such as fibromyalgia, are more
commonly reported in women. Sadly, this makes gender-based
discrimination a likely factor in the lack of treatment and recognition
[23] with a potential impact on patient-led research, too. Men and
non-binary individuals may face, however, their own barriers to care,
especially for diseases often characterized as more widespread in women.
The Long Covid movement has been largely built on leadership from women
and people from marginalized and minoritazed communities, including
disabled people/ people with disabilities. This was especially the case
for the first wave in 2020. This contribution to knowledge has been
ground-breaking and must be recognized as such.
I strongly recommend, thus, for the patient-led research model that has
gained wider recognition in Long Covid [24], to become the norm for
both Covid-19 and other diseases. It is my hope that patient-centred
expertise will be increasingly incorporated within the biomedical
community. This would contribute to critical changes in medical
awareness of chronic diseases and patient care.