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This week marks one year since Long Covid SOS became a registered charity 

We have been working hard behind the scenes over the past twelve months building our team and trustee board to better serve the Long Covid community


A world without Long Covid:  where prevention is possible, treatment is readily available, and recovery is achievable


To throw a lifeline to people living with the impact of Long Covid by pushing for greater recognition and awareness, driving forward targeted research, advocating for prevention and providing support and resources


We use our voice to promote recognition and understanding of the experiences of people with Long Covid and its devastating effects on their lives. We do this by: * Advocating for those with Long Covid by, working with key stakeholders including the NHS, policymakers, other organisations and institutions in the UK and worldwide. * Educating the wider public and medical community through social and other media * Promoting understanding on the impact of Long Covid on lives, relationships and work with a view to it being recognised as a disability,. * Providing a platform to share stories and validate the experiences of those with Long Covid * Providing information to people in all communities and reaching out to those who are unaware that they have Long Covid


We advocate for and encourage inclusive and appropriate research into Long Covid. We do this by: * Representing and promoting the patient voice in research and ensuring that lived experience is central to projects we support * Advocating for inclusive, accessible and relevant research with appropriate understanding of Long Covid * Using our voice to call for more research into effective treatments and prevention * Developing collaborative relationships with researchers and other organisations worldwide to inform research priorities for Long Covid


We advocate for and support those with Long Covid to live the best life they can by securing effective and appropriate care and treatment for them. We do this by: * Providing a trusted resource and links to support * Helping those with Long Covid live the best life they can * Listening to those with Long Covid and promoting their lived experience to health policy and decision makers * Using our voice to ensure that treatments are relevant and effective * Educating health practitioners so that they are empowered to treat people with Long Covid with empathy and respect, and to provide appropriate care


“There’s nobody who knows more about Long Covid than those who suffer from it, which is the foundation of Long Covid SOS. They have consistently kept ahead of the science and been a source of comfort to thousands of sufferers. It’s my honour to be their Patron" 
Emma Samms, Long Covid SOS Patron




ONS data published 30/03/2023 as of 5th March 2023

  • 1.9 million people have Long Covid: 2.9% of the UK population
  • 1.7 million first had symptoms at least 12 weeks previously
  • 1.3 million were first infected at least a year ago
  • 762,000 2 years or longer - + 10.6% on last month
  • 62,000 children aged 2-16 affected
  • The most deprived are almost 2x more likely to have Long Covid compared to the most well off
  • 1.5 million people or 79% have symptoms adversely affecting their lives
  • 381,000 (20%) report that their ability to undertake their day-to-day activities are "limited a lot"
Highest prevalence as a % of the population:
  • Age 50-69 (4.5%)
  • North East (3.7%)
  • Greatest deprivation (4.0%)
  • Social Care workers (5.3%)
  • Inactive - not looking for employment (7.4%)
  • 545,000 infected in the first wave
  • 247,000 had Covid during the Alpha wave
  • 327,000 during Delta
  • 698,000 - 35% - were infected during Omicron
  • 1.8% aged between 25-34 & 3.1% 35-49 have had Long Covid for more than a year
  • This is 560,000 people in the prime of their working lives
  • We estimate 328,000 of these people will be in the 2 years+ category
  • 4.0% social care workers & 3.3% in healthcare have been unwell for more than 12 months




Alice's story

I have read your submission [to the HSC Inquiry into the NHS Backlog] with great interest and can confirm that my husband and I, who both have Long Covid, have experienced a lot of the problems you describe, with some variations. Main points below, I hope this can feed into your knowledge base on the unfolding Long Covid disaster.

James' story

I am a 20 year old male with no underlying health conditions from the UK who first came down with symptoms of coronavirus on March 13th, just under two weeks before we entered lockdown. I was being cautious, staying at home as my studies allowed me to do so and because of this I had limited exposure to the virus.

Sarah's story

I’m at 45 year old wife mother of two, head of a busy events team living in London. The ultimate juggler of life always on the go 6am spin glasses late night gigs and always on my feet always busy till Covid. I think the main thing is that I have lived with this every day for the past year even on the very few good days which I hold onto like a winning lottery ticket.


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