From doctors as patients: a manifesto for tackling persisting symptoms of covid-19
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3565 (Published 15 September 2020) Cite this as: BMJ 2020;370:m3565
All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
Dear Editor
To further qualify this advice, it is necessary to clarify the type of cardiac testing that will be likely to find anomalies, for the subgroup of long haul covid patients who do not have organ damage (normal stress testing will show this) or relapsing active infection.
In ME/CFS we know that CPETs, especially repeat day CPETs, show exertion intolerance, as well as lowered aerobic threshold, abnormalities in vo2max and workloads.
In order to ensure that the testing used to screen long covid patients is accurate, increased medical awareness around this issue is required. If long haul covid patients are exertion intolerant as is found in ME/CFS, standard echos and aerobic stress tests can be expected to have normal results but make patients very ill.
It is a matter of urgency to establish data to show whether these patients have systemic exertion intolerance disease (the 2015 name for ME/CFS), which according to their accounts it would appear they do. It took many years to establish the correct protocol to see these abnormalities in ME/CFS, it would be a pity to repeat the same mistakes with this new patient group.
Some examples of the research:
[2014] Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004422/pdf/1479-5876-12-10...
[2018] Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome https://www.frontiersin.org/articles/10.3389/fped.2018.00242/
Thank you for your consideration
Angela
Competing interests: No competing interests
Dear Editor
Thank you so much for publishing this piece.
Having personally suffered with Covid19 and the long-haul aftermath with 6 A&E attendances, i can attest to the complete lack of knowledge, accountability and care of those with the disease.
I have seen rheumatologists, cardiologists, general physicians and GPs and much has been dismissed as anxiety despite a CT lung scan at 3months post infection showing pneumonitis and ground glass.
I have a remitting and relapsing picture with any stress or exertion.
I have enrolled on the COVERSCAN with first appointment on 5th October but have had to educate my own GP and others through social media in order to get information and guidance. Prof Paul Garner has been incredibly helpful, as has RUN DMC Youtube channel and Dr Jack Kreindler.
Best to All!
T
Competing interests: No competing interests
Dear Editor
I have every sympathy for everyone suffering from long-COVID, and would not wish it on anyone. But this letter could have been written many times over the last thirty years by people now labelled with ME/CFS. My son went down with a respiratory infection thirty years ago and has never been well since. The same happened to me twenty years ago. Dr Melvin Ramsey, who coined the term myalgic encephalomyelitis, believed that a number of different agents could trigger the condition, including a range of viruses.
Here are the key diagnostic factors according to BMJ Best Practice, September 2018:
• post-exertional malaise/fatigue (PEM), exertional exhaustion (common)
• short-term memory and/or concentration impairment (common)
• sore throat (common)
• generalised arthralgia without inflammation (common)
• headache/migraine with onset after the fatigue (common)
• unrefreshing sleep (common)
• persistent disabling fatigue (common)
• orthostatic intolerance (common)
• diffuse muscular, tendon, fascial, and other pain (common)
• tender lymph nodes (uncommon)
and of course there has to be no other medical explanation for it.
The label ME/CFS is just that, a label. Unfortunately many of the medical profession have attributed certain characteristics to it that have no evidence base whatsoever, along with therapies that have proved to be potentially harmful, such as inappropriate exercise,. Biomedical research into it has been starved of funds for decades. Many experts believe that there may be six to eight subgroups. So far I can see no reason why long-COVID should not be included – it's just one of a long list of recognised viral triggers.
I sincerely hope that research finds a quick solution for this condition, but find it frustrating that there has been very little concerted effort by the medical profession to press for similar research on ME/CFS, to bring some relief to the quarter of a million sufferers in the UK alone.
Competing interests: No competing interests
Dear Editor,
A group of health professionals affected by persisting symptoms of suspected or confirmed Covid-19 have called for further research into chronic Covid-19 symptoms (1). Earlier another health professional described experiencing a seven weeks long roller coaster of ill health, extreme emotions and utter exhaustion (2). Increasing attention is being drawn to a relatively under recognized condition labelled as “Long covid” to describe illness in people who have either recovered from Covid-19 but are still reporting lasting effects of the infection or have had the usual symptoms for far longer than would be expected. Many people, including several health professionals who have been infected, have been sharing their symptoms and experience through various channels (3).
The exact definition of “Long covid” is still evolving, in a recent online webinar on the diagnosis, management, and prognosis of “Long covid”, the expert panel used a working definition as " not recovering [for] several weeks or months following the start of symptoms that were suggestive of Covid-19, whether the person was tested or not" (4).
Recent studies from the UK and US have reported increased risk for SARS-CoV-2 infection among front-line health-care workers compared with the general community, using either self-reported data on COVID-19 testing positivity or a symptom-based predictor of positive infection status (5). A report based on a global survey by the International Council of Nurses estimate that infection rates among healthcare workers are likely to be in the range of 10% and an estimated 3 million healthcare professionals across the globe likely to be infected with COVID-19. This survey also revealed that less half the countries surveyed classify COVID-19 as an occupational disease (6). Emerging evidence suggests that healthcare workers are prone for reinfections and these could easily be missed when they are asymptomatic (7).
The underlying patho-physiological mechanisms in "Long covid" are not yet described. Anecdotal reports indicate that most persons experiencing chronic symptoms that qualify to be labelled as "Long covid" often experience mild symptoms or are asymptomatic when first infected with SARS-COV2 virus.
It has been reported that among children recovering after a mild attack of SARS-COV2 infection, a small percentage develop Multisystem Inflammatory Syndrome in Children (MIS-c) about 4-6 weeks after infection. It is postulated that prior immunity to other viruses trigger an enhanced immune response when these children are infected with SAR COV2 virus giving rise to hyper inflammation presenting as MIS-c (8).
Considering reports from healthcare professionals experiencing mild symptoms during their initial infection with SARS COV2 and thereafter a prolonged course of symptoms of fatigue, dyspnoea, joint pain, and chest pain, many of which are characteristic of autoimmune mediated responses, further research into the role of repeated exposure to SARS COV2 virus in a healthcare delivery setting and or in the community, and role of the repeated exposures leading to autoimmune mediated responses warrant urgent evaluation.
As health professionals are overwhelmed with a surge in workload posed by the rise in cases and growing demand on the health systems that have limited capacity, symptoms of chronic fatigue, joint pains and dyspnoea could easily be attributed to the additional workload or accompanying work related stress. Healthcare workers are likely to be silently suffering while experiencing “Long covid” even while continuing save lives during the ongoing pandemic.
As WHO launches the Patient Safety 2020 campaign on 17 September 2020 with a special focus on Health worker safety(9), creating global awareness on health worker safety by recognizing the immense burden that health professionals are likely to be experiencing due to the limited understanding, scant evidence and lack of coordinated mechanisms to diagnose, monitor and respond comprehensively to “Long covid” among health workers is an emerging occupational health priority of immediate global significance.
Digital health tools routinely used by healthcare workers in health services delivery could incorporate mechanisms for symptom tracking and contextual support for health-workers if adapted appropriately. The recently launched WHO Mobile Academy app (10) could incorporate specific modules on recognition and response to “Long covid” and offer opportunities for peer to peer support and pathways seek rehabilitative support. Where feasible national helplines for health workers to report occupation health and safety related matters will build confidence and provide reassurance to the millions of health workers who are risking their lives and serving their fellow citizens during this pandemic.
While we embark to light up monuments and public places in “orange” in solidarity with the health worker safety campaign, ensuring that healthcare workers are in the "pink of health" calls for concerted action from all stakeholders.
References:
1 Alwan NA, Attree E, Blair JM, et al. From doctors as patients: a manifesto for tackling persisting symptoms of covid-19. BMJ2020;370:m3565
2 Garner P. For 7 weeks I have been through a roller coaster of ill health, extreme emotions, and utter exhaustion. BMJ Opinion. 5 May 2020. https://blogs.bmj.com/bmj/2020/05/05/paul-garner-people-who-have-a-more-....
3 Mahase E. Covid-19: What do we know about “long covid”?. bmj. 2020 Jul 14;370.
4 Nabavi N. Long covid: How to define it and how to manage it. https://www.bmj.com/content/370/bmj.m3489
5 Nguyen LH, Drew DA, Graham MS, Joshi AD, Guo CG, Ma W, Mehta RS, Warner ET, Sikavi DR, Lo CH, Kwon S. Risk of COVID-19 among front-line health-care workers and the general community: a prospective cohort study. The Lancet Public Health. 2020 Jul 31.
6 https://www.icn.ch/news/new-icn-report-shows-governments-are-failing-pri...
7 Gupta, V., Bhoyar, R. C., Jain, A., Srivastava, S., Upadhayay, R., Imran, M., … Sivasubbu, S. (2020, September 15). Asymptomatic reinfection in two healthcare workers from India with genetically distinct SARS-CoV-2. https://doi.org/10.31219/osf.io/4fmrg
8 Consiglio CR, Cotugno N, Sardh F, Pou C, Amodio D, Rodriguez L, Tan Z, Zicari S, Ruggiero A, Pascucci GR, Santilli V. The immunology of multisystem inflammatory syndrome in children with COVID-19. Cell. 2020 Sep 6.
9 https://www.who.int/campaigns/world-patient-safety-day/2020
10 https://www.who.int/about/who-academy/the-who-academy-s-covid-19-mobile-...
Competing interests: No competing interests
Re: From doctors as patients: a manifesto for tackling persisting symptoms of covid-19
Dear Editor
Given the problematic nature of the long-term effects of COVID-19, it seems worthwhile to consider a broad-based range of hypotheses. Is there any work being done to look at possible long term alterations to metabolism of the cellular matrix components (collagen etc), the composition of the fluid mosaic cellular membranes (% representation and turnover of different types of lipids and proteins), and cell-cell signalling mechanisms?
This biophysical/biochemistry perspective has the potential to explain the broad range of lingering symptoms through changes to a small number of underlying factors. It is interesting to speculate about the extreme physiology of bats (thermal regimes) and the resulting selection pressure against the biophysical/biochemical characteristics of a bat virucell. There may also be possible links to chronic fatigue - in particular its prevalence in people with hypermobility spectrum disorders (e.g. Ehlers-Danlos ) and their vulnerability to mental health conditions.
Yours sincerely,
Heather Brindley
hmbrindley@smartmatterframework.org
Competing interests: No competing interests