Dr Jake Suett: My experience of suspected 'Long COVID'
I have been unwell for 109 days now, and the entire illness has been incredibly frightening, with episodes of severe shortness of breath, cardiac-type chest pains and palpitations to name a few. I think I am slowly improving but am left with residual symptoms that have never gone away entirely but regularly return strongly in waves.
In March, I was working as a staff grade intensive care doctor. I was working closely with patients with COVID-19 and had an illness that began with fever, dry cough and shortness of breath. I had braced myself for the coming wave of COVID-19 and was helping my hospital to prepare. I had studied the mortality data from a paper in The New England Journal of Medicine1 and had concluded that, as a young, healthy and active 31-year old doctor I would likely survive (very likely) or die (really quite unlikely) if I became exposed to the virus. I had not anticipated the existence of this strange third possibility of still feeling extremely ill nearly 16 weeks later.
I realised that I was not alone with my symptoms when I read Professor Paul Garner’s blog in the BMJ2 about six weeks into my illness. I joined some of the support groups on Facebook including 'Long Covid Support Group' and was suddenly faced with the realisation that there were thousands of us in the same position. It was a bittersweet moment as it helped me to feel less alone, but on the other hand confronted me with a tremendous volume of genuine human suffering that was going unrecorded and unnoticed due to the circumstances of the crisis.
People are experiencing incredibly frightening symptoms but some have found it hard to access healthcare as the NHS was being protected from being overwhelmed. Most have remained at home and have not been admitted to hospital. Many were unable to access testing in the first month of their illness, and most were never admitted to hospital. I wrote a letter (attached at the bottom of this blog) that other people could send to their MPs in an attempt to raise awareness of the situation of people suffering persistent symptoms.
Here are my current thoughts on the issue of 'Long COVID' and what the next practical steps should be in addressing the problem for sufferers and society in general.
In some people, there are prolonged symptoms of COVID-19, which have been called 'Long COVID' or 'Post-acute COVID-19'. There is a growing body of evidence that a significant minority of patients are suffering persisting and distressing symptoms that in ordinary times would represent 'red-flag' symptoms requiring urgent investigation. Data from the COVID-19 symptom tracker app shows that 1 in 10 patients are having symptoms for longer than three weeks3.
The British Lung Foundation and Asthma UK’s post-COVID survey4 of over 1000 patients, of which over 800 had not been admitted to hospital, found that:
“…many people who had mild – moderate COVID are now on a long road to recovery, affecting both their physical and mental health”
“When asked what symptoms most affect them, the top five were: breathing problems (90%), extreme tiredness (64%), sleep problems (22%), cough (22%) and changes in mood, or anxiety or depression (22%). The majority of people had not experienced these symptoms before having COVID.”
The symptoms experienced by these patients are frightening and are consistent with other serious differential diagnoses that would usually warrant urgent investigation to rule out serious causes. These symptoms include shortness of breath, chest pain and various neurological symptoms (numbness, weakness, visual disturbances etc). Many people report emergence of new symptoms late in the course of their illness, a relapsing-remitting pattern to their symptoms, and many have reported a mild initial illness, all of which adds to the distress and uncertainty of the condition. Tim Spector writes, “There is a whole other side to the virus which has not had attention because of the idea that ‘if you are not dead you are fine”3.
Some patients have reported requiring treatment for con-current bacterial pneumonia, urinary tract infections and pulmonary emboli. Some have reported other serious outcomes such as strokes and cholecystitis. Some that have had investigations have reported serious abnormalities on blood tests, echocardiograms and CTs. Most of these patients have not required hospital admission and many have not been able to access PCR testing at the early stage of their illness. At the moment, this data is not being collected in a scientific fashion, which is an impairment to building up an evidence base around the topic. This data urgently needs to be moved from anecdote into scientific studies and then applied clinically to help people.
Some high-profile figures have spoken out about their experiences with a prolonged illness including two Professors of Infectious Diseases and an MP5,6,7. There are many examples of people remaining unwell for three months and longer8 (see letter for more). Articles in the BMJ address the issue from the perspective of a GP9, and from the perspective of occupational health10. We already have emerging evidence of longer-term complications affecting the respiratory11, cardiovascular12, endocrine13, neurological14,15 and gastrointestinal16 systems in at least some patients after COVID-19 and a new Kawasaki disease type illness has been identified in children following infection17.
There are also plenty of historical warnings about long-term effects from the SARS outbreak in 200318,19 as well as well documented complications of other viral illnesses. On the basis of this, it is important for us to keep an open mind about what the underlying pathophysiology is in 'Long COVID' patients and encourage further epidemiological, mechanistic and treatment studies by those with expertise in the field. It would be dangerous to assume that pathology that has been detected in hospital patients with COVID-19 can not also affect those who may have managed to avoid admission.
Dealing with this issue will require research and collaboration between multiple different medical specialties. Perhaps collaboration and joint guidelines should be considered early on as well as urgently starting studies that capture this cohort. (The PHOSP-COVID study unfortunately only captures follow up in patients after hospitalisation, although of course is a welcome step in the right direction.)
The issue has started to be talked about more widely this week. Andrew Gwynne MP asked the Leader of the House of Commons for a debate or statement on 'Long COVID' during business questions on 2 July 2020 and First Minister of Scotland Nicola Sturgeon discussed the issue at Wednesday 1 July’s daily briefing saying, “One of the things it took us longer to learn, and we are still learning, is that even for people who don’t become very seriously unwell and don’t die from it, it can still do really long-term damage.”20
On Sunday 5 July, it was announced that NHS England would be launching a tool to aid long-term recovery21 and a statement from NHS England said, “…evidence shows that many of those survivors are likely to have significant on-going health problems, including breathing difficulties, enduring tiredness, reduced muscle function, impaired ability to perform vital everyday tasks and mental health problems such as post traumatic stress disorder (PTSD), anxiety and depression.”22
This is a welcome step and provides recognition to those who have been left struggling with persisting symptoms. However, it is important that these services do not exclude those who did not require hospital admission nor those whose clinical features suggest COVID-19 but who may have had trouble accessing testing or have suspected false negative results for a variety of reasons23,24,25,26. Clinicians need to be able to access these services for their patients if they feel they would benefit from them.
What is the danger?
Of course, the pandemic is a crisis and resources have been stretched to the limits. There is no cure for COVID-19 and there is still little evidence to suggest what the pathophysiology of the prolonged symptoms are. It’s been a challenging time for politicians, healthcare professionals and patients alike. However, there are risks with the current situation for those with 'Long COVID' that can be solved now as we move away from the peak of the first wave of the pandemic. The risks are:
That serious but treatable complications of COVID-19 may not be detected and managed, such as thromboses, secondary infections, or cardiovascular, endocrine or neurological sequelae etc.
That serious but treatable pathology may go undetected if misattributed to COVID-19 and not investigated.
There is a third danger from a public health perspective, which is to mistakenly consider outcomes in terms of death vs survival, and to not consider the possibility of long-term morbidity and delayed mortality in survivors of COVID-19, and therefore miscalculate the risk vs benefit calculations of easing lock-down and other public health measures.
There is the danger that we miss this opportunity to have robust epidemiological studies to capture the entire spectrum of COVID-19 disease, and therefore any potential morbidity and mortality associated with “Long-COVID” symptoms will go undetected, along with any clues that may be gained regarding the pathophysiology of COVID-19 and treatment options.
What needs to be done?
I believe that dealing with the problem of 'Long-COVID' will require a response from government, public health bodies, healthcare systems, scientists and society. Collectively, we will need to:
Establish a scientific approach to the study of patients undergoing prolonged COVID-19 symptoms (ensuring the cohort that was not hospitalised and has persisting symptoms is also captured in this data). This needs to include epidemiological, mechanistic and treatment studies. (The Long-term Impact of Infection with Novel Coronavirus (LIINC) study27 being carried out at University of California San Francisco is a good example of the type of study required for capturing objective data on the full spectrum of COVID-19 disease, including in those individuals with a prolonged illness. Maintain an open-minded approach to the underlying pathophysiology of the condition28,29, and avoid classifying it with existing names for diseases until there is sufficient evidence to make these statements. Include Long COVID patients in the study design stages.
Raise awareness amongst health professionals and make arrangements so that treatable pathology is investigated and ruled out. Provide information and guidelines on how to manage long-term COVID19.
Raise awareness amongst employers.
Consider the medical, psychological and financial support that may be required by these patients.
When considering measures to ease the lock-down, include a consideration of the risk of exposing additional people to prolonged COVID-19 symptoms and long-term health consequences.
Ensure and clarify that the plans announced on 5 July 2020 for research and rehabilitation by NHS England do not inappropriately exclude those who have not required hospital admission and do not exclude those who have been unable to access testing early on, or in whom a false negative test is suspected. It is important that similar services are available throughout the UK.
I have encouraged people with these persisting symptoms to write to their MPs to make clear the needs of this group. I have included a letter to explain the situation here in case they would find it helpful.
The Socratic paradox, "I know that I know nothing" must remind us to keep an open mind at this stage when dealing with a new disease. In his novel The Plague, Albert Camus wrote, “Everybody knows that pestilences have a way of recurring in the world; yet somehow we find it hard to believe in ones that crash down on our heads from a blue sky. There have been as many plagues as wars in history; yet always plagues and wars take people equally by surprise.”
We have already been taken by surprise by this virus in many ways. It’s important that creating a huge pool of long-term suffering, of unclear aetiology and with unclear outcome, in up to 5-10% of the population does not become an additional surprise. Even if these patients are uncommon, given the number of SARS-CoV2 infections the country has now seen we must arm ourselves with robust studies and evidence to inform healthcare practices and government policy moving forwards.
Unless we address this issue we will be left with a huge healthcare burden of chronic disease, and miss the opportunity to save lives and better understand this disease. Clinicians will face patients with these symptoms and have no access to evidence to help manage them. This will lead to bad health outcomes for both individual patients as well as causing significant impacts on society and public health in general.
Patient safety concerns for Long COVID patients (6 July 2020)
Press release: Patient Safety Learning calls for urgent action to ensure Long COVID patients are heard and supported (6 July 2020)
Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’
Wei-jie Guan, Ph.D., Zheng-yi Ni, M.D., Yu Hu, M.D., Wen-hua Liang, Ph.D., Chun-quan Ou, Ph.D., Jian-xing He, M.D., Lei Liu, M.D., Hong Shan, M.D., Chun-liang Lei, M.D., David S.C. Hui, M.D., Bin Du, M.D., Lan-juan Li, M.D., et al. Clinical Characteristics of Coronavirus Disease 2019 in China. N Engl J Med 2020; 382:1708-1720. https://www.nejm.org/doi/full/10.1056/NEJMoa2002032
Helen Salisbury: When will we be well again? BMJ 2020;369:m2490 https://www.bmj.com/content/369/bmj.m2490
Xiaoneng Mo, Wenhua Jian, Zhuquan Su, Mu Chen, Hui Peng, Ping Peng, Chunliang Lei, Shiyue Li, Ruchong Chen, Nanshan Zhong. Abnormal pulmonary function in COVID-19 patients at time of hospital discharge. European Respiratory Journal Jan 2020. https://erj.ersjournals.com/content/early/2020/05/07/13993003.01217-2020
Tomasz J Guzik, Saidi A Mohiddin, Anthony Dimarco, Vimal Patel, Kostas Savvatis, Federica M Marelli-Berg, Meena S Madhur, Maciej Tomaszewski, Pasquale Maffia, Fulvio D’Acquisto, Stuart A Nicklin, Ali J Marian, Ryszard Nosalski, Eleanor C Murray, Bartlomiej Guzik, Colin Berry, Rhian M Touyz, Reinhold Kreutz, Dao Wen Wang, David Bhella, Orlando Sagliocco, Filippo Crea, Emma C Thomson, Iain B McInnes. COVID-19 and the cardiovascular system: implications for risk assessment, diagnosis, and treatment options, Cardiovascular Research, cvaa106, https://doi.org/10.1093/cvr/cvaa106https://academic.oup.com/cardiovascres/article/doi/10.1093/cvr/cvaa106/5826160
Agarwal S, Agarwal SK. Endocrine changes in SARS-CoV-2 patients and lessons from SARS-CoV. Postgraduate Medical Journal 2020;96:412-416. https://pmj.bmj.com/content/96/1137/412
Antonino Giordano, Ghil Schwarz, Laura Cacciaguerra, Federica Esposito, Massimo Filippi. COVID-19: can we learn from encephalitis lethargica? The Lancet Neurology, 2020;19(7):570 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30189-7/fulltext#articleInformation
Mark A Ellul, Laura Benjamin, Bhagteshwar Singh, Suzannah Lant, Benedict Daniel Michael, Ava Easton, Rachel Kneen, Sylviane Defres, Jim Sejvar, Tom Solomon. Neurological associations of COVID-19, Lancet Neurol 2020, https://doi.org/10.1016/S1474-4422(20)30221-0 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30221-0/fulltext
Lijing Yang, Lei Tu. Implications of gastrointestinal manifestations of COVID-19. Lancet Gastroenterol Hepatol 2020; May 12, 2020. https://doi.org/10.1016/S2468-1253(20)30132-1https://www.thelancet.com/pdfs/journals/langas/PIIS2468-1253(20)30132-1.pdf
Galeotti, C., Bayry, J. Autoimmune and inflammatory diseases following COVID-19. Nat Rev Rheumatol (2020). https://doi.org/10.1038/s41584-020-0448-7https://www.nature.com/articles/s41584-020-0448-7
Ngai, J.C., Ko, F.W., Ng, S.S., To, K.‐W., Tong, M. and Hui, D.S. The long‐term impact of severe acute respiratory syndrome on pulmonary function, exercise capacity and health status. Respirology, 2010, 15: 543-550. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1440-1843.2010.01720.x
Ong, Kian-Chung et al. 1-Year Pulmonary Function and Health Status in Survivors of Severe Acute Respiratory Syndrome. CHEST, 2005, Volume 128, Issue 3, 1393 - 1400 https://journal.chestnet.org/article/S0012-3692(15)52164-8/fulltext
Watson Jessica, Whiting Penny F, Brush John E. Interpreting a covid-19 test result. BMJ 2020; 369: m1808https://www.bmj.com/content/369/bmj.m1808
Fan Wu, Aojie Wang, Mei Liu, Qimin Wang, Jun Chen, Shuai Xia, Yun Ling, Yuling Zhang, Jingna Xun, Lu Lu, Shibo Jiang, Hongzhou Lu, Yumei Wen, Jinghe Huang. Neutralizing antibody responses to SARS-CoV-2 in a COVID-19 recovered patient cohort and their implications. medRxiv 2020.03.30.20047365; doi: https://doi.org/10.1101/2020.03.30.20047365 https://www.medrxiv.org/content/10.1101/2020.03.30.20047365v2
Dominique Batisse MD Assistance, Nicolas Benech MD, Elisabeth Botelho-Nevers MD, Kevin Bouiller MD, Rocco Collarino MD, Anne Conrad MD, Laure Gallay MD, Francois Goehringer MD, Marie Gousseff MD, Dr Cedric Joseph MD, Adrien Lemaignen MD, PhD, Franc¸ois-Xavier Lescure MD, Bruno Levy MD, PhD, Matthieu Mahevas MD, PhD, Pauline Penot MD, Bruno Pozzetto MD, PhD, Dominique Salmon MD, PhD, Dorsaf SLAMA , Nicolas Vignier MD, PhD, Benjamin Wyplosz. Clinical recurrences of COVID-19 symptoms after recovery: viral relapse, reinfection or inflammatory rebound? Journal of Infection (2020), doi: https://doi.org/10.1016/j.jinf.2020.06.073 https://www.sciencedirect.com/science/article/pii/S0163445320304540?fbclid=IwAR0WEEf9dNtmXmFuU-m67g-Fs5SLdckb1f-FnNzSnX1tT4dw3uGWmsfnS60
Ding, H., Yin, S., Cheng, Y., Cai, Y., Huang, W. and Deng, W. Neurologic manifestations of nonhospitalized patients with COVID‐19 in Wuhan, China. MedComm, 2020. doi:10.1002/mco2.13 https://onlinelibrary.wiley.com/doi/full/10.1002/mco2.13?fbclid=IwAR1yQ8DkVOCsIdonjuzl8tx7LlBp0_Lt6KgVUW79SrFwo-_9nyZmWiz7rsQ