CAMPAIGNERS will be handing out thousands of leaflets at Edinburgh Waverley to raise awareness about long COVID which still affects millions across the world.
This Saturday will be Long COVID Awareness Day and also marks five years since the World Health Organisation (WHO) declared the global pandemic.
In honour of this milestone, Not Recovered UK have planned a leaflet drop and gathering outside Waverley Station to advocate for long COVID research, a petition for cleaner air, and awareness of the condition in children.
Long COVID, which is similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), causes extreme tiredness, shortness of breath, “brain fog”, heart palpitations, dizziness, and joint/muscle pain.
In 2023, a GoFundMe was launched to raise money for billboards raising awareness of long COVID and MECFS.
Almost £12,000 has now been raised, with billboards put up across the country in places like Swindon, North Ayrshire, Leeds, and Manchester.
Not Recovered UK is the UK branch of the international organisation committed to ending the suffering of millions of people affected by long COVID and ME/CFS across the globe.
The billboard campaign has also been set up in the US and Belgium, as well as a campaign to “Fund The Plan” in the UK which will ask ministers to consider the resources behind the ME/CFS delivery plan set to be published at the end of this month.
The cross-government delivery plan sets out actions on research towards those living with ME/CFS, and underwent a public consultation in 2023.
The Long COVID Myalgic Encephalomyelitis (LCME) campaign also launched a Lights Up for Long COVID Challenge last month, which asks for landmarks and buildings to light up in support of Long Covid on Saturday.
The Ship Builders Port in Glasgow will be lighting up their building on the day, as well as the Penshaw monument in Sunderland and the Montreal Olympic Stadium in Canada.
In Edinburgh, a call for volunteers has been put out by the LCME billboard campaign, so that the group can hand out thousands of leaflets outside Edinburgh Waverley Station.
According to the National Institute for Health and Care Research (NIHR): “Several drugs have now been shown to be effective in the acute stages of COVID-19; they improve the chances that hospitalised patients will survive.
“But unfortunately, we don’t yet have evidence for medicines to relieve long COVID.”
A spokesperson for Not Recovered said today: “March 15th is known worldwide as Long Covid Awareness Day so that’s why we’ve chosen this Saturday to go ahead with the campaign effort.
“It’s also marking 5 years of Long Covid for many people and there are still no approved treatments, the Long Covid clinics are shutting down, the condition is widely mocked and criticised and there’s very poor recognition of what Long Covid actually is.
“On Saturday the leaflets will be directing members of the public to the Not Recovered website where there’s a stack of information about Long Covid including research papers and testimonials highlighting just how much damage the virus has caused, and continues to cause (as there are still people dying and becoming disabled from Covid in 2025) as well as a donation link to fund the billboard campaign that was set up by Long Covid patients a year ago.
“The billboard campaign has raised around £12,000 in donations and have so far had some TV coverage, newspaper coverage and even responses from the Medical Research Council and the National Institute of Health Research regarding the lack of appropriate funding into the condition.
“As well as the leaflets there will also be photos and testimonials of Long Covid patients handed out to the public to add names and faces to the campaign too. Some of the patients are extremely ill, bedbound and unable to raise awareness or campaign in person.
“The campaign has close ties to Edinburgh too as one of the founders is Scottish and used to work in Edinburgh and has a network of friends there. We’ve also been hoping to get a billboard up there for a while.”
