A few weeks ago, we wrote a BMJ Opinion piece about the long term impacts of covid and called for patients’ experiences of long covid to be included in any initiatives to explore the experience of “long-haulers.” This opinion piece foregrounded a video called “message in a bottle” made by the LongCovidSOS patient group, which caught the attention of the World Health Organisation’s covid-19 response team. The LongCovidSOS team were then invited to organise a meeting. This opportunity to present the existing evidence and highlight patients’ experiences of having Long Covid took place on Friday 21 August 2020. The meeting was attended by Maria Van Kerkhove, (WHO Covid Technical Lead) and Janet Diaz (WHO Head of Clinical Care) from the central WHO team.

At the meeting, two of us, Clare Rayner and Amali Lokugamage, both doctors who are experiencing long term impacts of covid-19, discussed their perspective of having long covid.

As doctors we emphasised the following points:

• In our view, long covid needs to be recognised as a separate disease entity to acute covid, as the symptoms persist from the onset, are relapsing and last for months.
• Epidemiological studies counting the number of people affected need to be done.
• Long Covid is not “mild.”
• There is significant pathology that needs to be ruled out.
• Many patients have experienced a delay in being seen, believed, and medically assessed, and this needs to improve.
• Cardiac disease and other major organ disease need to be excluded before rehabilitation begins.
• We need to consider the occupational health implications of long absences in the work force.
• Patient experience needs to inform research and guideline development.

We also highlighted the Royal Society of Medicine’s seminar on rehabilitation after covid-19.  In this seminar, Lynne Turner-Stokes emphasised a diversity of presentation, and huge range of pathology with very different types of rehabilitation needs. There cannot be any “one size fits” all with rehabilitation. Before we get people exercising it is important to know that it is safe, so proper evaluation of cardiac and respiratory function is required. We don’t know the size of the challenge yet because many remained in the community who managed as best as they could. In retrospect, some of those should have been admitted especially those presenting early on. We also called attention to a 330 member UK doctors’ Long Covid group. Apparently, there are no similar peer-support groups in Europe.

Why patient led evidence matters

When LongCovidSOS was invited to a meeting by the WHO, we knew straight away that there was a need to present firm evidence and robust statistics in order to be taken seriously. To help them achieve this, Hannah Davis of Patient-Led Research presented the findings of a report on the main characteristics of long covid, based on a detailed survey of members of the Body Politic Slack support group and other covid-19 support groups. The picture she gave was one of a complex illness which consistently affects young and fit people, presents a multitude of symptoms across the cardiovascular, neurological, respiratory, and gastrointestinal systems, and afflicts patients with cyclical relapses. The research was also cited in a recent BMJ piece on guidelines for GPs on how to care for long haulers. Frances Simpson, the mother of two children who have had covid-19 presented on the experiences of other parents whose children have had long covid, based on information from patient support groups. 

Listening to patients with long covid is key

In the final part of the discussion we heard from Pauline Oustric from the French campaigning group #ApresJ20. Pauline spoke about active support groups and campaigning initiatives across Europe that have emerged in the wake of the first wave of the pandemic. In her talk Pauline asked for recognition, research, and rehabilitation, the three pillars of all long covid campaigning. She also asked for better communication and called for the WHO and national governments to warn populations of the risks of long covid, as a matter of urgency. Encouragingly, France has already responded to this plea with a short public information film about a young people’s experiences. 

Covid-19 is a new disease and the long-term effects have taken the research and medical communities by surprise. We strongly believe that it is only by listening to peoples’ experiences carefully and compassionately that solutions will be found. 

They gave us hope

At the end it became apparent that Dr. Tedros Adhanom Ghebreyesus had been listening in the side lines. He suddenly appeared, to summarise at the end, thanked us each by name, and re-quoted part of our presentation where Amali had said “with patient-led research and patient-led activism, it appears that patients are writing the first textbook on long covid.”

He said touchingly that he wanted the audience to know: we have watched your film, received the “message in the bottle,” we have received your “SOS.” We have heard loud and clear that long covid needs recognition, guidelines, research and ongoing patient input and narratives, to shape the WHO response from here on.  

Amali Lokugamage is a consultant in obstetrics and gynaecology at Whittington Health NHS Trust, London, UK, and honorary associate professor and deputy lead of clinical and professional practice at UCL Medical School, London.

Clare Rayner is a specialist occupational health physician and honorary lecturer University of Manchester Medical School

Frances Simpson Frances Simpson is a lecturer in Psychology and Counselling at Coventry University (SC.) She is also a sufferer of Long Covid and a founder member of LCSOS

Lucie Carayon is a Long Covid sufferer and a member of the LongCovidSOS campaigning team.

Competing interests: AUL is on the Board of Directors of the International MotherBaby Childbirth organisation. She is a company director of a small publishing company called Docamali Ltd. CR, FS and LC none declared.