Long Covid patients say their voices and their struggle are being ignored

As many as 1.9 million people in the UK have been affected by Long Covid, so why isn’t it talked about more often?

PEOPLE suffering the long-term consequences of Covid-19 feel ignored by government and the public, they say.

The Welsh module of the Covid inquiry runs until March 14, but even though International Long Covid Awareness Day falls on March 15, the issue is not on the agenda.

Gareth Evans, 46 wants to change that. He started a fundraiser seeking £450 to put up a billboard in Cardiff to raise awareness of Long Covid. He ended up raising more than expected and has put the extra money into similar billboards wherever the Covid inquiry goes next.

The billboard is on Cowbridge Road East, opposite the ESSO garage.

“There needs to be a greater focus on the long-term ramifications of the virus, so I’m going to be at the inquiry every day, just so someone with Long Covid is actually there,” said Gareth, who has suffered from Long Covid since April 2020.

In March 2023 it was estimated that 53,000 people in Wales alone had Long Covid. Doctors at UCL Hospital think somewhere between one and five percent of the UK population are affected by the disease.

“Long Covid continues to limit the lives of millions in the UK and countless others around the globe,”

Professor Danny Altmann.  

Victims of Long Covid say that despite a possible 1.9 million people affected across the UK, there is a lack of political and media coverage of the disease, which they worry leads to apathy from the public.

Dr David Putrino, a leading American voice on Long Covid of the Icahn School of Medicine at Mount Sinai, referred to the illness as a “mass disabling event”.

What is Long Covid?

Two Long Covid patients discuss how it affects their daily life

In simple terms, Long Covid is identified as Covid symptoms that have lasted longer than 12 weeks.

However, those symptoms can manifest differently in different people. Which makes it much more difficult to track and treat.

People suffering from the disease are not confident they will get the treatment they need, especially since there is no one-size-fits-all treatment.

According to an ONS study in 2023, based on figures of people at home, with self-reported Long Covid symptoms, these were the most likely symptoms.

“It’s so difficult for people to prove they have it, especially when GPs don’t know for sure what it is,” said Mr Evans.

Part of the issue is that, with one key symptom being tiredness, it may not be taken as seriously as it should be.

Dr Emma Wall, , an Infectious Diseases expert at University College London Hospital, explains Long Covid as “a disconnect between the amount of oxygen in your blood and the amount of oxygen in the tissue that needs it”. This may lead to tiredness but can also lead to far more severe side effects.

This slider shows a normal lung, compared to the lung of a Long Covid patient.

Why does Long Covid feel like a fringe issue?

Two Long Covid patients discuss how perceptions of Long Covid change how it is dealt with

“The government think the pandemic is in the past while the WHO say its still in the present,” said Ondine Sherwood, Co-Founder of Long Covid SOS.

Ms Sherwood said that this change in perspective on Covid-19 by the government leads to a lack of public messaging around Covid and Long Covid.

It is possible that as many as one in 20 people in the UK have or have had Long Covid, but patients with Long Covid remark on their surprise when they got it.

“Long Covid continues to limit the lives of millions in the UK and countless others around the globe,” said Professor Danny Altmann, a Professor of Immunology at Imperial College London.  

The National Library of Medicine published an article in July 2021 asking whether Covid-19 could be considered a new trauma type. Perhaps partly, Long Covid fails to take up more of the public consciousness because of how eager everyone was to move on from the pandemic as soon as it was possible.

There are groups trying to change this. Long Covid Support and Long Covid SOS, are both UK based charities doing what they can to raise awareness of Long Covid, and push for change.

What needs to change?

JC Bjerkeland talks about what would help her and others with Long Covid

“If there was more covid awareness, especially in a health setting, that could really change things pretty quickly,” said Ms Sherwood.

She argued that reintroducing and normalising mask-wearing will slow the spread of disease, and lower the risk of more Long Covid infections.

“People need to be considerate,” said JC Bjerkeland, 37.

Gareth Evans’ billboard states: “We demand clinical trials now!”.

Ms Sherwood said clinical trials will make it possible for NHS doctors to prescribe medicines for Long Covid that they’re not able to at the moment.

This means GPs often offer symptom management, rather than specific medical treatment for Long Covid.

“I have given up on regular GPs,” said Jennifer Robertson, 49.

Wales has no Long Covid specific rehabilitation centres. The Welsh Government website says: “In some cases, you may need to go to hospital, if this is the case, you will be referred by your GP.”

Staying hopeful for the future

Long Covid patients talk about how they stay hopeful for the future

March 15 will mark the second annual International Long Covid Awareness Day. Long Covid SOS are planning to send a reply to a letter from Rishi Sunak’s office, asking him to do more, and renew funding for Long Covid research to mark the day.

The Long Covid Choir, which meets over zoom, will be releasing a new video on their Youtube channel, which JC Bjerkeland will be performing in.

The Welsh module of the Covid Inquiry will close on March 14, and perhaps, with Gareth Evans’ billboard, and the push of Long Covid Awareness Day, the subject will get more airtime in Module 3 which begins on September 9.