Physician Moms Group: the support network that’s needed more than ever during the covid-19 pandemicBMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m1499 (Published 26 May 2020) Cite this as: BMJ 2020;369:m1499
All rapid responses
This letter response highlights a major problem: lack or pragmatic information. For many weeks now the BMJ and other journals have been repeating stories about lockdowns, ppe, hydroxychloroquine, second wave and other things very well covered in the mainstream media and very little of use for medical practice. Why is this?
What has been totally absent is primary care information on managing non-admitted people, what is 'normal and safe;' when should alarm bells ring, what monitoring and pastoral care we should aim for and, as this letter describes, the post acute covid syndromes and how to manage them.
Is chest pain 4 weeks later a reason to exclude a pe--for example, in a fit young person--more than normal triage would lead one to on the recent NICE rule out pe flow chart.
This data one hopes is being collated and will soon be shared even if it later needs modifying, however, with the chaos of non-testing and test results not going to GPs it makes things much harder.
Competing interests: No competing interests
Re: Physician Moms Group: the support network that’s needed more than ever during the covid-19 pandemic
We met on-line through this group – all searching to find a reason why our covid-19 symptoms weren’t resolving after the expected 2 weeks. It was a great relief to find many other doctors like us, still struggling with significant covid symptoms for weeks and even months. Prolonged fever for 2 months, peri-myocarditis, oxygen desaturation on slight exertion, dyspnoea at rest, and late pulmonary embolism are common complaints among us. But even as doctors we have struggled to access medical investigation and assessment for complications that would seem significant in normal times. The NHS was impressively reorganised to triage and manage patients that need oxygen or ventilation. However this has meant if you are not critically ill at rest, then the advice has been to self-isolate at home with no medical follow-up.
Covid-19 is a new disease, so not in the textbooks yet. Little is even in medical literature - most research is still in progress. We have been relying on personal stories, informal case reports & shared articles to try to piece together this new disease. Our experience didn’t fit the official narrative that is already out of date. We have discovered patient covid forums on social media too. These contain thousands of patients with prolonged symptoms lasting up to 90 days and counting, who are confused and frightened. Some have horrific stories of denial and dismissal by clinicians. We have been surprised to find that many medical professionals aren’t aware that prolonged moderate covid even exists, and can involve significant symptoms in patients that haven’t been hospitalised.
We are concerned that many of these patients have serious pathology that need investigating and treating. During this pandemic access to out-patients investigations and face-to-face assessments has been very limited. As the NHS opens up again it needs to be ready for a potential tsunami of patients that have been hidden until now in the community. Most will not have been eligible for antigen swabs, so won’t even have an official diagnosis. Some will just have post viral fatigue, but will need support through this especially if previously fit and active or risk chronic fatigue syndrome. However there also needs to be a clear pathway to assess those that are still symptomatic. They need access to urgent investigation to exclude treatable complications.
Research is clearly still needed but we have observed these common threads across various patient forums. Some of these symptoms and signs are now well known, but not all. Children can also have long tail disease.
● Relaxing-remitting symptoms occurring in cycles, usually of a few weeks
● Minor exertion triggers relapse
● Chest pain and breathlessness at rest or on exertion
● Prolonged fever or hypothermia
● Persistent sore throat or cough
● Rashes, bruising, covid toes
● PE/DVT including late and atypical sites
● GI symptoms (dyspepsia, diarrhoea, nausea)
● Neurological symptoms (migraine, confusion, tremors, sensory changes, trigeminal neuralgia)
● Localized myalgia, swelling, wasting
● Insomnia, anxiety
● Eye problems
● Reactivation of previous infections, especially Epstein Barr Virus
● Normal viral signs at rest that change on exertion (desaturation, tachycardia, bradycardia)
● Routine blood tests including inflammatory markers may be normal
● Covid antibody negative, including after positive antigen swabs
These symptoms may be due to prolonged active infection or a post-covid syndrome and can co-exist with post viral complications. Some patients report spontaneous recovery stories from around 9 weeks onwards. Social media is helpful to spot emerging trends. From what we have seen the NHS needs to be prepared for these patients to present. This is going to need cross-specialty working particularly involving respiratory, cardiology, haematology and infectious disease.
We need to move on from the narrative that covid-19 results in either ICU admission or recovery within a fortnight. Data from the COVID Symptom Study suggests that 1 in 10 people are sick for 3 weeks or more¹. There is no known treatment for covid-19. We need to support patients, many of whom are doctors, to fully recover and ensure they are not pressured back to work prematurely.
Mary-Ann Bowen, GP, Wyre Forest
Caitriona Dynan, consultant radiologist, Belfast
Iulia Hammond, ST1 GP trainee, Manchester
Alexis Wiltshire, locum GP, Liverpool
¹ COVID symptom study (2020) How long does COVID-19 last? Retrieved 6.6.2020 from covid.joinzoe.com
Competing interests: No competing interests