In December campaigners from Not Recovered UK – who all either live with long Covid, myalgic encephalomyelitis (ME, sometimes known as chronic fatigue syndrome, CFS), or are impacted by them – launched a major new campaign about these disabling chronic illnesses. However, the response to the campaign from the UK’s main medical research organisation has been slammed by the group as ‘disheartening and upsetting’.
Long Covid and ME: destroying lives
Across the country, Not Recovered UK is taking out billboard adverts. The group has put them in Bournemouth, Southampton, Havant, Swindon, Portsmouth, Manchester, Leeds, Bradford, and Glasgow:
The billboards are highlighting that for millions of people, there are currently no effective treatments for long Covid and ME. They also state that doctors often leave these patients without help. Overall, the billboards point to the fact there is still no cure for either of these conditions, too. All of this is partly due to the medical community’s poor understanding of long Covid and ME:
The public have been funding the campaign via a crowdfunder. Many people living with long Covid or ME have donated themselves. You can donate to the crowdfunder here.
Aaron Campbell founded the campaign. He has lived with long Covid since July 2022. Campbell said he launched the billboards project out of:
Desperation. ME patients have been left to suffer for decades without any appropriate treatments and it is very likely that long Covid patients (50% of these patients are meeting the criteria for ME) will have a similar fate unless there is an urgent and drastic change in the level of research and funding they are both currently receiving.
Not Recovered UK hopes that by taking out such prominent adverts, the campaign will start breaking down the stigma that surrounds long Covid and ME patients.
Campbell said:
Aside from raising awareness and calling for appropriate research and treatments, the billboards and their messaging are a push back on the minimising and harmful narratives surrounding them that these patients will be cured by exercise, diet or mindfulness techniques.
It is time that attitudes towards ‘invisible illnesses’ are changed and follow the actual scientific literature regarding abnormalities found in these patient groups and acknowledge that these people are truly, genuinely sick who desperately need medical treatments.
However, one billboard especially was of importance.
In Swindon, Not Recovered UK placed it near to the head office of the UK’s Medical Research Council (MRC):
The Medical Research Council: waiting for comment
The group hoped it would prompt a response from the MRC – with people on social media asking it to take notice:
@UKRI_News @The_MRC — please check out this billboard campaign for #LongCovid / #MECFS. One billboard is currently up in Swindon.
Funding for biomedical research on #LongCovid / #MECFS is urgently needed! Millions are suffering just in the UK alone.
— Elke Asen (@ElkeAsen) December 10, 2023
However, the MRC was not forthcoming. So, Not Recovered UK reached out to the organisation. It said:
even though this billboard location was selected specifically for capturing the attention of the Medical Research Council within the UKRI building in Swindon, we have unfortunately had no acknowledgement from them even with our community tagging them in various Tweets over the last week.
The group noted to the MRC that it has:
had to witness a great deal of inaction from the UK government when it comes to biomedical research for Post Covid and ME… little has been allocated to researching the stated conditions, much of which has not been spent on biomedical research but rather on – at best – ineffective and due to post-exertional malaise (PEM) often even harmful therapies such as Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT).
Most importantly, as of today, there are still zero approved treatments for both conditions. Given the amount of suffering as well as economic costs these severe illnesses cause, this is unacceptable.
We would like to kindly request an official comment from the UK Medical Research Council on our billboard campaign as well as on the – in comparison to other (similar) diseases – chronically low funding allocated to Long Covid and ME/cfs.
‘We are funding long Covid and ME research’… but only just…
The MRC did actually respond to Not Recovered UK. Dr Jonathan Pearce, director of strategy and planning at the MRC, said:
UK Research and Innovation (UKRI)’s Medical Research Council (MRC) funds research across the research and development pathway to improve human health, including fundamental and mechanistic biology, and translational research through to early phase clinical trials. Applications are judged in open competition and the primary considerations in funding decisions are scientific quality and importance to human health.
MRC has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for a number of years, co-funding a Priority Setting Partnership to identify research priorities in this area and maintaining an open highlight notice to encourage ME/CFS research. In addition, in 2020, we joined the National Institute of Health and Care Research (NIHR) to support research into Long-COVID.
Since 2020, MRC and NIHR have collectively awarded over £50 million for research on ME/CFS and Long-COVID. This includes:
- Four studies to identify the causes of Long-COVID and effective therapies to treat people who experience chronic symptoms of the disease.
- DecodeME, which aims to find genetic risk factors of ME/CFS to better understand the disease and ultimately to find treatments.
In addition, MRC has supported a study to investigate the long-term impacts of lung damage after COVID-19 and the role of autoantibodies in ME/CFS.
We continue to encourage high-quality research proposals across all our funding opportunities for these important areas.
Of course, £50m for research is a miniscule amount of money compared to other diseases.
For example, from 2007 to 2015 the UK government and UK research bodies spent £82.20 per patient, per year on multiple sclerosis. The equivalent figure for ME was £4.40. Between 2015 and 2021 MS funding increased to £164 per patient, per year. For long Covid, between October 2020 and May 2023 the equivalent of just £10.75 per patient, per year, was spent on research.
This lack of parity in funding for both conditions is one of the main points of the campaign. So, Not Recovered UK is calling for the government and research bodies to release £100m a year to fund long Covid and ME research.
‘Disheartened and upset’
Pearce and the MRC’s response left Campbell disappointed and angry.
He told the Canary:
I’m really disheartened and upset for myself and everyone in the community that even though these patients are fighting for their lives and literally self funding their own billboards in a cry for help, the MRC can’t specifically acknowledge these efforts or address concerns that patients have with the lack of research funding and allocation of these funds.
If expensive billboards in public spaces aren’t enough to show how desperate we are for their acknowledgement and understanding then what is it going to take?
For the MRC to effectively do a copy and paste job from its website as a response to chronically ill people paying for their own campaign because, in part, of the MRC’s lack of funding for research is staggering.
It shows that, despite the warm words, the attitudes from medical organisations towards post-viral illnesses haven’t changed – which is exactly why Not Recovered UK’s billboards are so important and desperately needed. However, it’s sad that chronically ill people are having to pay for their own awareness campaign in the first place.
Featured image and additional images via Not Recovered UK
