This is an extract of a letter LongCovidSOS sent to NICE on 6th November 2020
Like many of your stakeholders, we were very disappointed at the choice of name for this condition. As you will be aware, ‘Long Covid’ is a patient-derived term which, as has been acknowledged, has been embraced by the entire community of sufferers. The use of the suggested ‘Post Covid-19 Syndrome’ nomenclature will go much further than the 'purposes of the guideline': in the UK it has already appeared in documents produced by the NHS and professional bodies and may well gain international use. The justification provided that your chosen term is needed to ‘implement appropriate services and coding to support the care’ of Long Covid sufferers seems inadequate in the face of the almost universal use of Long Covid by both patients and professionals.
There are two areas we would like to explore: the broad agreement that ‘Post Covid-19 Syndrome’ is unhelpful and inappropriate, and the significance to sufferers of the term ‘Long Covid’.
This implies that the Covid-19 illness is over, and much of the guidance attempts to separate the disease trajectory into defined stages. This creates what one sufferer describes as an ‘artificial fracture’ between infection and what follows, and this is supported by consultation comments received from the Chartered Society of Physiotherapy. Although some may report a distinct set of symptoms in the first two weeks, for many there is no clear delineation between the so called ‘acute’ phase and the period that follows. The illness may change over time, but its severity may not, and for some the period following the initial infection may produce symptoms that are worse. There is rarely any sense that the initial illness has ‘resolved’, other than during periods of remission for those suffering relapses, nor an impression that the symptoms are somehow unconnected to the initial infection. The use of ‘Post’ has no scientific basis: at present, research definitively stating that the virus has left the bodies of Long Covid sufferers does not exist; on the contrary, cases of viral reactivation and long term persistence have been identified. The term ‘post’ has many negative connotations – conveying a sense that the infection has been dealt with, but the individual is now suffering ‘after effects’ which may be due to their own physiology or predisposition. They are no longer a victim of an insidious pathogen but possibly prone to a bodily – or even psychological – manifestation of their own weakness and inability to throw off the disease. It takes no account of the fact that the symptoms may be caused by damage to organs and sufferers feel that this term could be used to their detriment to marginalise their experience.
The OED defines ‘syndrome’ as “a condition characterised by a set of associated symptoms”. The use of this word further separates Long Covid from the initial infection with SARS-CoV-2. It places it within the realm of illness of uncertain aetiology, rather than one rooted in infectious disease. This is not an accurate reflection of this condition, but rather is a term which one of your stakeholders describes as ‘carrying a long legacy of stigma’. It serves to minimise the importance of, and risks rendering inconsequential, a serious illness which can manifest significant pathophysiology and as such is strongly rejected by sufferers.
After so many months fighting for recognition, the rejection of this patient-made term is perceived in a very negative light. Many concerns had already been very well expressed in stakeholder comments you published from patient groups.
The importance of patient contribution to research and medical guidelines is universally acknowledged. Callard and Perego describe how patient suffering and inequalities can be increased when their contributions are ignored. It is this patient group which is “redefining COVID-19” and which has brought this phenomena to the notice of the medical establishment; patient narratives appearing in the early months of the epidemic and advocacy by groups such as ours have only recently, many months into the pandemic, resulted in official recognition in the UK. Patient generated research has been ahead of the scientific community in documenting the experience of Long Covid and patients’ collective efforts have defined the illness. The Open Letter “Why the Patient-Made Term 'Long Covid' is needed” explains how this “open and malleable” term “advocates … for a nuanced and personalized approach to each patient” and avoids early categorisation in a disease which is not yet fully understood. Long Covid is described by sufferers as a term that is inclusive, neutral, freeing, and expresses humility.
The strength of feeling in the community can be summed up in this tweet: “In short, 'Post-Covid Syndrome' holds us in chains. It doesn't come from patients, and will be used against us: medically, socially, and politically”. By ignoring the voices of patients, they are being sent a message that rather than being supported, they are once again being dismissed. Their protests recorded in the NICE peer consultation need to be taken seriously.
Please listen to patients, and show that they will continue to be listened to by recognising the importance of the term Long Covid as symbolic of a collective suffering. We are asking, on behalf of the wider patient group, for you to reconsider your decision and instead to promote the continued use of Long Covid to designate this complex condition.