It became apparent by early spring that COVID-19 was producing high morbidity - low mortality pandemic; several times deadlier than than seasonal flu, but not as lethal as might be expected from MERS-CoV, SARS, or avian H5N1, H5N6, or H7N9.
While relatively good news, it was tempered by reports of long hospitalizations, and slow recoveries, by many COVID-19 patients.
Many COVID patients `recovered' with permanent damage, due to pulmonary embolisms, thrombotic events, strokes, kidney damage, and heart attacks. Others reported `brain fog', fatigue, and other debilitating symptoms lingering long after the virus had cleared their body.
Clyde W. Yancy, MD, MSc1,2; Gregg C. Fonarow, MD3,4JAMA Cardiol. Published online July 27, 2020. doi:10.1001/jamacardio.2020.3575
Emily A. Troyer, Jordan N. Kohn, and Suzi Hong
In early July, Dr. Anthony Fauci expressed concerns that many COVID patients are suffering from a post-viral syndrome - similar to ME/CFS - which has disabled and traumatized as many as two and half million Americans over the past 3 decades (see NIH About CFS/ME).
The compounded tragedy of ME/CFS is that for decades many doctors trivialized, and marginalized, these patients, believing their illness to be psychological, not physiological. While this syndrome has finally been recognized as real by the CDC and NIH, the cause - and an effective treatment - remain elusive.
Increasingly, there are concerns in the medical community that some significant percentage of `recovered' COVID-19 patients may be suffering from a similar malady, one that could leave tens of millions of people - many times more than have died from the disease - severely disabled for months, years, or even a lifetime.
Dubbed `Long COVID', this post-COVID syndrome is poorly understood, and is likely due to more than just one cause.
All of which brings us to a review, published late last week by the UK's NIHR (National Institute for Health Research), that outlines what is known about this syndrome, and suggests that multiple causes may be at work.
You'll find a link (and an excerpt) from the full (29-page PDF) report below, followed by excerpts from an NIHR press release. Follow the links to read both in their entirety.
Living with Covid19Published on 15 October 2020 doi: 10.3310/themedreview_41169A dynamic review of the evidence around ongoing Covid19 symptoms (often called Long Covid).You can also download the review as a PDF here: Living with Covid Themed Review. This is accurate as of 15th October 2020, please see the website for updates.Key MessagesThe novel coronavirus (Covid19) pandemic declared by the World Health Organisation in March 2020 has had far-reaching effects upon people’s lives, health care systems and wider society. As yet there is little research into the number of people at risk of developing ongoing Covid19. Early attention has been on the acute illness generated by the virus, but it is becoming clear that, for some people, Covid19 infection is a long term illness.This rapid and dynamic review draws on the lived experience of patients and expert consensus as well as published evidence to better understand the impact of ongoing effects of Covid19, how health and social care services should respond, and what future research questions might be. Our steering group concluded:
- There is a widespread perception that people either die, get admitted to hospital or recover after two weeks. It is increasingly clear that for some people there is a distinct pathway of ongoing effects. There is an urgent need to better understand the symptom journey and the clinical risks that underlie that. People, their families and healthcare professionals need realistic expectations about what to expect.
- A major obstacle is the lack of consensus on diagnostic criteria for ongoing Covid19. A working diagnosis that is recognised by healthcare services, employers and government agencies would facilitate access to much needed support and provide the basis for planning appropriate services. Whilst it is too early to give a precise definition, guidance on reaching a working diagnosis and a code for clinical datasets is needed.
- The fluctuating and multisystem symptoms need to be acknowledged. A common theme is that symptoms arise in one physiological system then abate only for symptoms to arise in a different system.
- There are significant psychological and social impacts that will have long-term consequences for individuals and for society if not well managed.
- The multisystem nature of ongoing Covid19 means that it needs to be considered holistically (both in service provision and in research). The varying degrees of dependency mean support in the community should be considered alongside hospital one-stop clinics. Social support needs to be understood together with the financial pressures on previously economically active people.
- Covid19 has a disproportionate effect on certain parts of the population, including care home residents. Black and Asian communities have seen high death rates and there are concerns about other minority groups and the socially disadvantaged. These people are already seldom heard in research as well as travellers, the homeless, those in prisons, people with mental health problems or learning difficulties; each having particular and distinct needs in relation to ongoing Covid19 that need to be understood.
Published: 15/10/2020Read Time: 6 minutesThe NIHR Centre for Engagement and Dissemination (CED) has today published its first dynamic themed review of the scientific evidence on, and lived experience of, long-term ‘ongoing’ COVID-19.‘Living with COVID’ draws on the most up-to-date expert consensus and published evidence, as well as the lived experience of both post-hospitalised and non-hospitalised COVID-19 patients, to better understand the impact of ongoing effects of COVID19, how health and social care services should respond, and what future research questions might be.The review’s findings include:
- Ongoing COVID may not be one syndrome but possibly up to four different syndromes.
- A common theme is that symptoms arise in one physiological system then abate only for symptoms to arise in a different system.
- A working diagnosis recognised by healthcare services, employers and government agencies would facilitate patient access to much needed support and provide the basis for planning appropriate services.
- There are powerful stories that ongoing COVID symptoms are experienced by people of all ages, and people from all backgrounds. We cannot assume that groups who are at low risk of life threatening disease and death during acute infections are also at low risk of ongoing COVID.
Symptoms - what the research so far tells usThe review finds that, while we are at an early stage of understanding the disease, a number of small surveys are reporting remarkably similar findings, with a wide range of recurring symptoms experienced by both post-hospitalised and non-hospitalised COVID-19 patients. These affect the respiratory system, the brain, cardiovascular system and heart, the kidneys, the gut, the liver and even skin. They can range in intensity and duration and do not necessarily present in a linear or sequential manner.Such a wide range of symptoms creates diagnostic uncertainty, with the review suggesting that ongoing COVID may in fact be due to a number of different syndromes such as Post Intensive Care syndrome, Post Viral Fatigue syndrome and Long Term COVID syndrome and permanent organ damage, which some patients may be experiencing simultaneously.The absence of a definition may impact the ability of patients to have their symptoms and experiences properly recognised and treated by healthcare services, which can in turn have a further psychological impact, especially for non-hospitalised patients who were never formally diagnosed.The review outlines how a working diagnosis recognised by healthcare services, employers and government agencies would facilitate access to much needed support and provide the basis for planning appropriate services. While no single definition at this early stage may be appropriate, an NHS code for clinical datasets and further diagnostic guidance is needed.Further, the review found that, with one or two exceptions, much of the commissioned research into COVID-19 so far looks at a single symptom or physiological system rather than the whole experience. The challenge now is to design research that integrates reported lived experience needs with clinical models of care, and which recognise the social and psychological consequences of ongoing COVID.Dr Elaine Maxwell, review author, Content Lead for NIHR CED, said: “This review highlights the detrimental physical and psychological impact that ongoing COVID is having on many people’s lives, and how healthcare services have at times struggled to manage these new and fluctuating patterns of symptoms and problems.“Our aim is that healthcare services and staff will use this review to better understand the experiences patients have to deal with, and provide them with the access to treatment, care and support they need.“While research is at an early stage, listening to the testimony of people living with the ongoing effects of Covid19 provides rich insights into where we should focus future research, as well as the services we should be commissioning now.”
There are estimates that 10% (or more) of recovered COVID-19 cases could experience prolonged symptoms, lasting weeks, months, or longer. All of which could translate into millions of `post-viral syndrome' cases in the United States alone.
The ultimate burden of COVID-19 won't be fully known for years, but it will surely extend far beyond just the number of lives lost directly due to the virus.
Making SARS-CoV-2 a virus you really, really, don't want to contract if you can avoid it.