My friend Ondine Sherwood, who has died from lung cancer aged 65, was one of the earliest campaigners for the recognition of Long Covid. Having failed to recover fully from Covid-19 in March 2020, she discovered that others were suffering similarly and GPs did not seem to know how to diagnose them. Ondine rapidly became the main spokesperson for the patient-created term “Long Covid”. She founded the groupLong Covid SOSthat June and secured charitable status and trustees.
Ondine lobbied politicians, doctors and civil servants for recognition of the illness. She stressed that the narrative of Covid being mild and flu-like unless the patient was vulnerable was not true.
In July 2020,Long CovidSOS sent a letter to the prime minister, Boris Johnson, copied to many relevant parties, warning of the risk of the numbers of people with Long Covid increasing significantly if there were a second wave. Ondine appeared on Newsnight and Woman’s Hour and was involved in setting up the first meeting with the World Health Organization for patients with Long Covid. Gradually, in large part through her efforts, public awareness of the desperate needs of these patients grew.
As a result of Ondine’s advocacy, the “Long Covid groups”, four campaign groups including Long Covid SOS, became core participants in the government’sCovid inquiry, in which I was instructed as lead counsel. In October 2023, Ondine gave powerful and compelling evidence.
Danny Altmann, professor of immunology at Imperial CollegeLondon, said: “Ondine’s drive and vision in recognising the emergent picture of Long Covid and her determination to ‘do something’ was prescient, bold, and totally in character. Long Covid is now a clinical entity described in more than 50,000 peer-reviewed medical journals papers, estimated to (still) affect 2 million in the UK and 400 million globally, but was then debated, questioned or even mocked.”
Jane Ryan, solicitor for the Long Covid groups, noted that “it is without doubt that absent Ondine’s advocacy, the recognition and support for patients suffering post-acute sequelae from Covid-19 [the lingering health problems that can persist after the initial acute phase of the illness has passed] would have been far worse”.
Ondine was born in Stoke Newington, London, the younger daughter of Joss Sherwood, a salmon smoker, and his wife, Kitty (nee Katanka). She studied textile technology and design at Umist in Manchester, and went into the fashion industry, working for Jaeger and the Burton Group. In 2019 she undertook a master’s degree at UCL in the politics and economics of health.
Ondine’s approach was grounded in principles of public health and she leaves an important legacy for all those with Long Covid and their families. She was passionate, tenacious, dynamic and beautiful, with a huge zest for life.
She is survived by her husband Steve Kriss, a podiatrist, whom she met in 1980, and married in 1985, and their three sons, Sam, Benji and Alexander.