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Wednesday 15th March 2023 is
International Long Covid Awareness day

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Things Need to Change


We sent out our first SOS in July 2020 and it was answered by the NHS and the WHO among others.  We are now a registered charity, throwing a lifeline to all those who are living with the debilitating impact of Covid-19: Long Covid


We campaign for research into Long Covid, carry out our own surveys, and collaborate with researchers, including and promoting the voice of those with lived experience in a number of publicly-funded research projects.  We advocate for appropriate, inclusive and relevant research and have representation on expert panels informing research priorities.


We promote recognition and understanding, and use our voice to emphasise the importance of supporting people with Long Covid by working closely with government departments and ministers, institutions including the NHS, NIHR, ONS and NICE and international bodies such as the WHO.  We collaborate with other charities and advocacy groups and educate the wider public via broadcast and press media and through our social media channels.


We have had an ongoing dialogue with NHS England since August 2020, with regular meetings and updates to share information. We have been members of the Long Covid National Taskforce since its inception and have provided vital data through several surveys and reports. Members of the team have been appointed Patient & Public Voice Partners for NHS England and our submission to the HSC Committee Inquiry into the Backlog is informing the NHSE plan for Long Covid 2022/23. We also work closely with the RCGP, collaborating on educational materials for their members and the wider public


“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 02/02/2023 as of 2nd January 2023 (revised on 20/03/23)

  • 2 million people have Long Covid: 3% of the UK population
  • 1.8 million have had symptoms for at least 12 weeks
  • 1.2 million have been unwell for 1 year or longer
  • 689,000 2 years or longer - + 6.5% on last month
  • 58,000 children aged 2-16 affected
  • The most deprived are almost 3x more likely to be badly impacted by symptoms as the most well off
  • 1.5 million people or 77% have symptoms adversely affecting their lives
  • 381,000 (19%) 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 (4.6%)
  • North East (3.6%)
  • Greatest deprivation (4.0%)
  • Social Care workers (5.7%)
  • Inactive - not looking for employment (7.6%)
  • 614,000 infected in the first wave
  • 251,000 had Covid during the Alpha wave
  • 338,000 during Delta
  • 705,000 - 35% - were infected during Omicron
  • 1.7% aged between 25-34 & 2.9% 35-49 have had Long Covid for more than a year
  • This is 521,000 people in the prime of their working lives
  • We estimate 299,000 of these people will be in the 2 years+ category
  • 3.3% social care workers & 3.0% 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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