In this blog, Clare Rayner, an occupational physician, describes how an international collaboration to help understand Long Covid was established by harnessing the power of technology and social media. This collective, between a group of UK doctors experiencing prolonged health problems after Covid-19 infection and a globally renowned rehabilitation clinic at Mount Sinai Hospital in New York, aims to help both patients and healthcare professionals by disseminating learning about Long Covid from both sides of the Atlantic.
In the early days of the Covid-19 pandemic, when we knew very little about the natural history of the virus, groups of patients started to report long-lasting symptoms. This was termed Long Covid or Post-Acute Covid Syndrome (PACS), and it posed great uncertainty for both clinicians and patients, particularly as case numbers rose.
I was one of a group of UK doctors experiencing Long Covid who formed a social media group to make sense of our own experiences. This helped us to identify patterns of ill-health and share knowledge. In mid-2020, we published medical articles about the patterns of symptoms that many people were experiencing.
The birth of a transatlantic collaboration – the PACS International Working Group
In August 2020, at a World Health Organization (WHO) meeting, Dr Amali Lokugamage and I were asked by UK patient support groups to explain the medical effects of Long Covid. The meeting was arranged by WHO in response to requests by patient groups for help. They asked WHO to ‘Recognise, Research and Rehabilitate’ Long Covid. To this, Amali and I added a fourth R: ‘Return to work’, as we saw the negative impact of Long Covid on people’s employment.
Following this meeting, I made a connection with Dr David Putrino, Director of the Department of Rehabilitation Innovation at Mount Sinai Health System. He shared our concerns about the health, work and economic implications of Long Covid.
In an article that reported on the WHO meeting, Dr Putrino said, “What we need to do is rapidly mobilise and educate people that Long Covid is a real thing, and it’s going to be around for a while. There's a lot of hurt and we are doing what we can to help, but we need a lot of people to pick up the torch and run with us.”
Dr Putrino’s objective was not just to get WHO and the United States Center for Disease Control (CDC) to recognise the longer term health impacts of Covid-19, but also to acknowledge that the condition was occurring in a vast number of people, many with negative PCR and antibody tests. In the US, people were being denied insurance payments for healthcare and disability payments on these grounds. In the UK, people were – and still are – facing similar difficulty in accessing healthcare, support to stay in work and disability benefits. We also shared concerns that patients who hadn’t been hospitalised were being ignored despite experiencing prolonged illness.
The Rehabilitation Innovation Department at Mount Sinai Hospital had set up the world’s first clinic for rehabilitation of non-hospitalised PACS patients. Due to the number of Covid cases in New York, they were also the first to develop a way of monitoring acute cases at home when the hospitals had no space. The US team was working flat-out seeing patients, and lacked the time or manpower to get their knowledge of the condition out more widely.
So we decided to pick up the torch and help meet the urgent need to write information to educate clinicians around the world about Long Covid. Amali and I consulted our Doctors with Long Covid Facebook group, which had around 350 members at the time and was discussing and collecting a database of research. We recruited a few doctors who were also experienced educators.
Global teamwork powered by Zoom and social media
We met at an initial Zoom meeting, where members from the Mount Sinai medical and rehabilitation teams described the health problems they were seeing as a result of Long Covid and how they were treating them. Their expertise in inherited and autonomic cardiovascular disorders meant that they had recognised important patterns of autonomic dysfunction early in the pandemic. On the UK side, we were medically qualified volunteers with diverse skills in general practice, hospital medicine, child health, psychiatry, sports medicine and physiotherapy. Some of us were experiencing Long Covid ourselves and some were running post-Covid clinics.
We agreed that Mount Sinai would provide their data and knowledge from managing PACS, while the UK team would use our medical expertise, lived experiences and skills as communicators to produce a trustworthy stream of educational information for patients and healthcare workers.
The key aim of the group was to create educational networks and resources in order to:
- increase awareness of Long Covid
- inform research and clinical practice
- provide both patients and clinicians with key concepts to help manage the patterns of illness, both in the UK and the US.
Outputs of the collaboration
We met monthly on Zoom from August 2020 to discuss emerging health problems. Together, we identified the dominant health problems in Long Covid rehabilitation, and began to learn how to manage them. The US team noted that ‘standard’ rehabilitation and exercise approaches caused worsening. They developed schemes to take account of the dominant autonomic nervous system dysfunction and modified their assessment tests.
Over time, we brought information from New York to the UK about the most adverse health problems caused by Long Covid:
- Autonomic Dysfunction - how to recognise triggers and manage it.
- Neurocognitive problems.
- Severe debility, more than with other viruses. People with Long Covid absolutely cannot exercise at first and should start with breathing exercises.
- Sense of trauma - the emotional impact of lack of access to healthcare, or not being believed.
We disseminated this information through regional and national committees organising Long Covid care in the UK, but these messages were not taken on board. Cascade learning has been more effective in getting key messages across, through our now thousand-member Doctors with Long Covid group, and other patient groups. Some clinicians that have returned to work are also sharing information and good practice.
The UK team created an online repository of research papers on Long Covid pathology and management of health issues, which was used by Mount Sinai staff and patients. We wrote information leaflets and publications for UK and US use and shared them on a website hosted by Mount Sinai, including ‘Men and Long Covid’, ‘Top tips for general practice’, ‘You don’t need a positive test’, ‘Covid and voice problems’ and ‘Returning to work after Covid-19’. We took part in Mount Sinai’s cognitive rehabilitation programme and they shared their research outcome data on various topics.
We all contributed to the World Physiotherapy Association Briefing document for safe rehabilitation in post-Covid syndrome, and some of us are currently part of the WHO Guideline Development Group on PACS Rehabilitation. In 2021, we jointly took part in webinars for the UK Society of Occupational Medicine, and spoke at WHO and UK multidisciplinary clinical meetings.
Barriers to progress in understanding and treating Long Covid
It has been frustrating having spent a year trying to share learning, only for it to be ignored. A year after we first shared our findings on the subject in September 2021, senior respiratory clinicians finally admitted that pulmonary rehabilitation techniques designed for other conditions do not work in Long Covid.
The UK has focused on reinventing the wheel and not getting it turning, and this has led to a delay in people with Long Covid receiving appropriate advice. We have seen first-hand how collectively loud the patient voice has had to be, to be listened to.
Ongoing transatlantic collaboration and support
It has, however, been energising to work in collaboration, solving problems and using investigative skills to develop effective and safe rehabilitation techniques. The PACS group continues to meet, pulling in different people as required, and we see the potential for future research collaborations. We also continue to support and communicate each other’s constructive messages via social media.
Our collaboration of lived experience, professional expertise, collective action and determination to deliver rapid learning and treatment is an unexpected benefit of the challenging circumstances we have faced during this pandemic.
The mythology of Long Covid - 9 common misconceptions
Promises of Long Covid support have not materialised (a blog by Clare Rayner)
My experience of suspected 'Long COVID'
Long Covid: Information gaps and the safety implications (7 June 2021)
Children with Long Covid: Co-producing a specialist community public health nursing response (19 October 2021)
How will NHS staff with Long Covid be supported?
About the Author
Clare Rayner is a retired consultant occupational physician, trainer and facilitator. After developing prolonged health problems with Covid-19 during the first wave of the pandemic in 2020, she has worked hard to increase understanding and knowledge of Long Covid, and has helped develop resources for doctors, patients and policy-makers.