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 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 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 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


Thousands and thousands of us have been struggling for weeks and months with ongoing symptoms of Covid-19.



ONS data published 01/09/2022 as of 31st July 2022

  • 2 million people have Long Covid: 3.1% of the UK population
  • 1.7 million have had symptoms for at least 12 weeks
  • 892,000 have been unwell for 1 year or longer
  • 429,000 2 years or longer
  • 98,000 children aged 2-16 affected
  • 1.5 million people or 72% have symptoms adversely affecting their lives
  • 384,000 (21%) report that their ability to undertake their day-to-day activities are "limited a lot". 
  • Highest prevalence: Age 50-69 (4.4%) North East (3.9%) Greatest deprivation (4.1%) Social Care workers (5.6%)
  • Inactive - not looking for employment (6.4%)
  • 582,000 were infected in the first wave
  • 256,000 had Covid during the Alpha wave
  • 386,000 during Delta
  • 681,000 - 34% - were infected during Omicron, this is a rise of 16% on last month
NB: ONS have now moved to remote data collection and this may mean the figures aren't fully comparable with those in previous bulletins.




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.