parliament set for protests & noise

  • Post last modified:March 14, 2024
  • Reading time:11 mins read

On Friday 15 March 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 – will be taking to the streets of Westminster to raise awareness on Long Covid Awareness Day. 

Long Covid and ME: destroying lives

Previously across the UK, the group has taken out billboard adverts. Not Recovered UK has put them in Bournemouth, Southampton, Havant, Swindon, Portsmouth, Manchester, Leeds, Bradford, Cardiff, and Glasgow:

A billboard being put up that reads "Long covid and ME/CFS destroy lives. No help. no treatments. No cure. We demand clinical trials now."

The billboards were highlighting that for millions of people, there are currently no effective treatments for long Covid and ME. They also stated that doctors often leave these patients without help. Overall, the billboards pointed 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 impact of all this can be devastating – hence Long Covid Awareness Day. 

‘A shell of myself’

Alex lives with long Covid. He said of the disease:

Before contracting Covid-19 in March 2020, I was a fit and healthy 29 year old. I went to the gym five days a week and competed in weight lifting competitions; rode my BMX for hours a day; had no health problems, and had a bright future as an engineer.

I am now a shell of that person.

Mostly I am confined to a wheelchair and have to spend my days housebound, as even short trips outside make me sick. This illness is very isolating, most of my time is spent alone and I barely see any of my friends. It has also cost me my relationship and all my hobbies. 

There are no treatments and none of my doctors can help me. It feels as if I have been completely abandoned by the government. My life is on hold and I don’t know if I will ever get it back. Long Covid has stolen my identity.

Stories like Alex’s make the campaign all the more urgent. It was only possible thanks to a crowdfunding initiative – which has seen nearly £6,000 of donations. Sadly, yet tellingly, many of these donations have come from chronically ill and disabled people themselves.

Long Covid Awareness Day

Now, Not Recovered UK has decided to take action on Long Covid Awareness Day. Once again, thanks to crowdfunding the group has hired a Digivan which will display information about the disease and patients’ pictures and stories. On top of this, Not Recovered UK has printed 10,000 leaflets – using the billboard as inspiration – which will be distributed by patients, their allies, and campaigners. 

The Digivan and campaigners will start Long Covid Awareness Day at 10am at the Department for Work and Pensions (DWP), before making multiple stops at parliament, the Department of Health and Social Care (DHSC), and Downing Street:

The route of the Long Covid Awareness Day Digivan. It reads: 10am, DWP, 11am, parliament square, 12pm department of health and social care, 1pm, parliament square, 2pm Downing Street, 3pm, parliament, 4pm DWP

At parliament, Not Recovered UK has invited MPs from all parties to come and discuss Long Covid with patients and campaigners. Plus, at Downing Street the group has hinted that it will be “making some noise” – aimed at the occupants inside. 

The leaflets campaigners will be distributing on Long Covid Awareness Day contain the billboard imagery on the front, and a easy-read fact sheet on the back. If you want to get involved on the day in Westminster, contact Not Recovered UK on X

The reasons for what campaigners refer to as the ‘destruction of their lives’ in the leaflets is, in part, a lack of funding from both government and research bodies for these debilitating conditions.

Getting everyone involved

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, on Long Covid Awareness Day the group is calling for the government and research bodies to release £100m a year to fund long Covid and ME research. 

Aaron Campbell founded the campaign. He has lived with long Covid since July 2022. Campbell said he launched the 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.

Many of these patients are too sick to leave their beds and an online awareness campaign driven by donations ensures that everyone is given an opportunity to be involved – whether that be through their own donations, suggesting locations for the billboards and voting for them on Twitter or even just sharing the GoFundMe to others – and finally means society can see the true extent of the suffering these people go through and just how desperate they are to get their lives back.

The name on the billboards and leaflets is Not Recovered who are an international unity of patients working together to fight for research for chronic health conditions. This is a global issue. There are millions of us needing help.

Long Covid Awareness Day: time for change

Not Recovered UK hopes that by taking such prominent action on Long Covid Awareness Day, 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. 

You can donate to the crowdfunding campaign here, and find out more about Not Recovered UK here.

If you wish to volunteer on Long Covid Awareness Day handing out Not Recovered UK leaflets, contact the team on X here for more information.

Featured image via Not Recovered UK

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