RECOGNITION

Oct 2024

Evidence on Long Covid is heard at the UK Covid Inquiry module 3 - our advocacy is highlighted by Inquiry Counsel during questioning of Natalie Rogers, representing the Long Covid Groups

Oct 2024

We publish our first of its kind survey report on public attitudes towards Long Covid in the UK

Sept 2024

Our team member Sarah Barley-McMullen and our CEO take part in the 'Together against Covid' conference, during the Inequalities plenary session

Aug 2024

We write to the new Labour government with a Fact Sheet detailing the impact of Long Covid on the workforce and economy, in order to help define policy on Long Covid

April 2024

We write to Maria Caulfield, Under Secretary of State for Health and Social Care to demand £80 Million in research funding for Long Covid

March 2024

We launch our GP leaflet in partnership with the RCGP and companion leaflet for people with Long Covid planning a GP visit

March 2024

We launch our Bill of Rights for people with Long Covid

Jan 2024

We write a joint letter to the Scottish Government to complain about an update published to the Long Covid guidance on NHS Scotland's Inform platform.

Dec 2023

The Long Covid Groups launch the #ItCouldHappenToYou campaign to coincide with Boris Johnson's appearance at the Covid Inquiry

Nov 2023

We launch our brand new Resources page, providing practical help, support and links to other organisations who can provide advice and guidance for those who have Long Covid, their families and carers.

Nov 2023

Our co-founder is interviewed by Sarah-Jane Mee on Sky News along with Secretary to the Covid Inquiry Ben Connah

Oct 2023

Our Co-founder provides oral evidence to the UK Covid Inquiry on behalf of the 'Long Covid Groups'

Oct 2023

Long Covid SOS appear on BBC TV News on the day Module 2 of the Covid Inquiry begins

Sept 2023

Long Covid SOS along with other Long Covid charities protest at being excluded from the UK Covid Inquiry Module 4

Aug 2023

We write to Health Secretary Steve Barclay MP asking the government to expand the vaccine rollout. Our letter is published in the BMJ

July 2023

Our team member Susannah chaired a session at the NIHR/Long Covid Support webinar "Long Covid What Needs to Happen Next?"

June 2023

Our Co Founder was invited to appear on Independent Sage to discuss Long Covid provision in other countries

March 2023

The film we made for International Long Covid Awareness Day is shown on BBC East Midlands Today

March 2023

Following a inappropriate headline published by the BBC, we write to Alva UK and the BBC to complain - apologies are issued

March 2023

Our Co-founder is interviewed for 'The Long Haul', Research-Aid Networks

Jan 2023

Long Covid SOS writes to Health Secretary Steve Barclay: The UK Is Running Out Of Clean Air. The letter was signed by 20 other organisations calling for the government to pass legislation to ensure people using indoor public spaces are protected from airborne pathogens.

Jan 2023

Along with Pandemic Aid Networks and Long Covid Kids we write to the BMJ to highlight the flaws in a highly publicised study which suggests that most people with Long Covid recover within a year

Oct 2022

Along with 2 other Long Covid charities we are granted Core Participant status in the UK Covid-19 Inquiry

Sept 2022

We issue a statement on the appointment of Secretary of State for Health and Social Care Rt Hon Steve Barclay MP

Sept 2022

We write to Thérèse Coffey and our letter is published in the BMJ: "The needs of patients with Long Covid must not be ignored"

Sept 2022

Two members of Long Covid SOS, trustee Karen Matthews and volunteer Dr Susannah Thompson take part in the Long COVID Physio International Forum

June 2022

Long Covid SOS becomes a registered charity

June 2022

Long Covid SOS appear on COVID-19 Open Online Briefings
with Dr David Nabarro (at 26:50)

May 2022

Long Covid SOS join the launch of the Independent Sage Covid Safety Pledge initiative

March 2022

Our co-founder Lyth appeared in this NIHR national webinar about latest Long COVID trials

Feb 2022

Our Vaccine study is cited by UKHSA in the briefing 'The effectiveness of vaccination against long COVID'

Feb 2022

We send out a press release warning about the impact of ending all Covid restrictions, covered in i News

Jan 2022

The Health and Social Care Select Committee publish their report, the section on Long Covid is informed by our submission

Jan 2022

The Big Issue includes Long Covid SOS as a Changemaker 'campaigning to help creative positive change' in health and sport

Oct 2021

We partner with the Royal College of General Practitioners in a series of educational webinars for GPs (not available to the public)

Sept 2021

Our co-founder talks to Julia Hartley-Brewer about the latest ONS data on Long Covid

Sept 2021

We submitted evidence to the Health and Social Care Select Committee inquiry into the NHS backlog and appeared in front of the committee

Aug 2021

Our co-founder is interviewed by Julia Hartley Brewer on Talk Radio

Aug 2021

We partner with Asthma + Lung UK to advise them on the creation of the My Long COVID Needs assessment tool

July 2021

Our co-founder appeared on BBC Newsnight: “People’s lives have been radically changed and they just cannot get back to where they were before.”

July 2021

Our co-founder is interviewed along with Vicky van der Togt by John Campbell

July 2021

Our co-founder tells Julia Hartley Brewer "We should be concerned" as almost 400,000 suffer long Covid symptoms for over a year

July 2021

We wrote to our Health Secretary Sajid Javid in response to the plan to remove all restrictions on July 19th, our letter was printed in the BMJ

July 2021

We wrote to the Prime Minister through our lawyers Bhatt Murphy calling for the inclusion in the forthcoming Public Inquiry of people with Long Covid and for the inquiry to take place as soon as possible.

June 2021

Two members of Long Covid SOS are appointed Patient and Public Voice Partners for NHS England

May 2021

We published a resource for employees on our website with links to support organisations

May 2021

Our vaccine research study features on the BBC

Mar 2021

March 2021 saw the launch of our survey in collaboration with academics on the impact of vaccines on Long Covid. It is the largest to date on this subject and the peer reviewed paper has now been published

Feb 2021

We wrote to Matt Hancock in February 2020 to ask for more research funding to help develop urgent treatments for people with Long Covid. The second NIHR Long Covid call was announced in March

Feb 2021

In February we became partners in the NIHR funded University of Birmingham TLC Long Covid research project

Jan 2021

We anticipated the pressure to lift #COVID19 measures after vulnerable groups were vaccinated back in January 2021 and wrote to Boris Johnson to urge the government to take #LongCovid into account when making policy decisions

Oct 2020

Members of Long Covid SOS are members of the NICE Expert Group on Long Covid. We wrote to them in October 2020 to protest at the proposed renaming of Long Covid as Post Covid Syndrome

Oct 2020

Our co-founder appeared on BBC Womens Hour along with Dr Nisreen Alwan in October 2020

Oct 2020

In October 2020 we began to highlight the issue of Long Covid in children

Sept 2020

Our advocacy is highlighted in a UK Parliament Rapid Response post 'Short and long term health effects of COVID-19'

Sept 2020

In September we met with Prof Stephen Powis, Medical Director NHSE and his team from NHS England. We started a dialogue to provide the patient perspective and press for better care for people with Long Covid which is ongoing

Aug 2020

At the end of August we organised an historic meeting with the WHO. 'We have received your SOS. We have heard loud and clear that Long Covid needs recognition, guidelines, research and ongoing patient input and narratives': Dr Tedros

Aug 2020

The FT covered the story in August 2020. "The government has to wake up and realise we might be dealing with a really big problem here, affecting hundreds of thousands"

July 2020

Our film was featured on ITV News later in July 2020

July 2020

Our Open Letter to Boris Johnson was copied to all sitting MPs and health policymakers

July 2020

We launched our film "Message in a Bottle". It has been translated into five languages and has been viewed more than 90,000 times