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Long Covid SOS was established in June 2020 during the early months of the pandemic and is staffed entirely by volunteers with lived experience of Long Covid.  We are now registered with the Charity Commission and our governance is provided by a board of trustees

We have played a major role in generating awareness of the condition through social media and press campaigning.  We work closely with the NHS, RCGP, Dept for Health and Social Care, NICE, ONS, NIHR and the WHO and also collaborate with researchers in order to further our mission of Recognition, Research and Rehabilitation for people with Long Covid.  Moving forward we aim to continue to be an active voice, providing an informed and lived experience perspective to national and international organisations as well as the research community



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Ondine Sherwood


Ondine had a Covid-19 infection in March 2020 and after failing to recover became one of the founding members of LongCovidSOS, where her focus is on campaigning.  Ondine is an IT professional, an HRA Research Ethics committee member, and has a Master’s in PPE of Health from UCL.  She is a former PPV4 partner for NHS England, and is a member of the NHSE Long Covid Taskforce, the NIHR Expert Group on Long Covid and is on the steering committee for the STIMULATE-ICP study 


Helen Lunt Davies


Helen worked as an Archaeological Illustrator for 25 years after gaining a degree in Graphic Design and Scientific Illustration from Middlesex University. She retrained as a Silversmith and Jeweller at Central St Martins in 2019.


Helen has been suffering with Long Covid since contracting the virus in the first wave, March 2020. She has become a patient advocate for people suffering with Long Covid and is passionate about being a voice and campaigner for others suffering with this debilitating illness.


Garry Loftus


Garry served in the British Army for 25 years.  He contracted COVID-19 in December 2020.

As Garry loves the sea he now applies a daily mantra close to his heart: "One day, one wave at a time" in order to battle his own Long Covid. 

Garry is highly driven to support, help and guide people in the best way he can, by becoming a voice for those that need one.

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Sarah Barley-McMullen


Sarah is a former University Diversity and Inclusion Lead and Senior Lecturer. Having retired in March 2022, due to Long COVID, she set up an inclusion and belonging consultancy called, ‘Be Longing for Change’, Since then she has become an Associate of the National Youth Agency, where she is working on the creation of new National Youth Work practice standards for Equality, Diversity, and Inclusion.

Sarah lives with Long COVID and navigates the challenges and impact this has on her life in a glass half full way. She is a fierce advocate for others living with Long COVID, and also works as a PPV for NHS England, where she contributes to policy, messaging, and primary care training resources on Long COVID.

Sarah is a Trustee for Derby Diocesan Board of Education, as a Youth Work and Equality, Diversity and Inclusion (EDI) specialist. She became a Stonewall Role Model in 2019, the same year she set up Pride in Belper, a community interest group who were shortlisted for LGBT+ Community Organisation of the Year in the National Diversity Awards 2021-22. Sarah is married to Helen, and they are both owned by their cockapoo called Steve.


Janet Gunter


Janet has dedicated her professional life to working alongside social movements, and founding and running a non-profit. Quakers and Amy Goodman (Democracy Now!) helped turn her into campaigner as a teenager in the US, and she hasn't stopped since. She is a "first waver" - she got sick in April 2020 and never recovered. Since then she met her fellow sick activists online, and started learning about disability justice and the history of people fighting for help with chronic illness. She helps Long Covid SOS with fundraising and strategy.


Orli Summers


Orli Summers is a writer and a poet. In a previous life not so long ago she was also a trauma informed massage therapist working with women and children within the asylum system and  a ward sister on an acute medical unit. That all ended in May 2019 when she inevitably contracted CV-19 during the first wave while working as a front line Covid specialist community nurse. Just as many of her colleagues exposed to a high viral load, she became acutely unwell and has been left with the life altering legacy of Long Covid. She remains passionate about her vocation as a nurse and whilst she is no longer able to work, she is dedicated to using her voice to help advocate for the Long Covid community. 

Orli was featured in Kate Garraway’s documentary ‘Finding Derek’ and in several national newspapers, and has used her experience both as a Covid nurse and a Long Covid patient to give testimony at WHO conferences and to help formulate podcasts and other training tools for medics. 

Orli maintains a stance of fierce grace, deep surrender and endless faith to get her through the darker days and firmly believes that this is not the end of the story for those with Long Covid.  Better days are coming.




NC loves to write (read ‘ramble’), and read. She has a PhD in Biochemistry and is working as a Medical Writer.
She developed Long Covid after contracting a COVID-19 infection in August 2022 and is learning how to navigate life with a chronic illness and promoting education about Long Covid in whatever capacity she can. On the occasions when she has the energy, you will find her drawing or roaming around the city, listening to Bollywood songs (sometimes singing), and taking amateur photographs (emphasis on ‘amateur’) on her phone, or reading a nice book with some hot chocolate





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