Long Covid and ME: Patients call for clinical trials after conditions leave them unable to walk

Rowena Davies and Gareth Evans are among 160,000 people currently living with a chronic illness in Wales. Credit: Shauna Chambers/Gareth Evans

People living with long term illnesses are calling for more clinical trials in Wales to help tackle their conditions. 

Around 160,000 people in Wales currently live with a chronic illness.

All new treatments and medications rely on clinical trials to test their effectiveness and safety.

They are funded in a number of ways and can often provide patients with earlier access to the latest medicine and treatments.

According to data from the company Clarivate, the number of industry trials in Wales fell by as much as 60% over the five years up to 2023.

It has led those living with chronic conditions to call for medical trials to be further prioritised.

Gareth Evans is actively calling for more trials in Wales. Credit: ITV Wales

In 2019, Gareth Evans was balancing working full-time as an accountant while training for a triathlon.

However, when the 42-year-old from Cwmbran caught Covid, his life changed beyond recognition, having to move in with his parents and learn to walk again.

“My life at that point compared to what it was before was completely different,” he told ITV’s Wales This Week programme. 

“I couldn’t do anything. I couldn’t work, I couldn’t exercise, I even struggled to watch TV because I couldn’t concentrate for that long. 

“It was a complete switch and a complete role reversal.”

Gareth's calls for more trials come amid a wider UK campaign. Credit: ITV Wales

Commercial trials are funded by the pharmaceutical companies developing new treatments, while others may be funded by charities or through government funding in the form of grants. 

Conditions like Gareth’s rely on trials and research to better understand how to best treat them.

Gareth has been unable to take part in any trials in Wales instead travelling to Oxford, Derby and Exeter in the hope they will contribute to a treatment for Long Covid.

“Post-viral illnesses have been around for decades. At the moment there’s very little in the way of proven treatments for those conditions,” he continued.

“I think we could do more, whether it be the government or pharmaceutical companies getting involved.

“Similar to the way they did in the early stages of the pandemic to come up with a vaccine, they could focus more effort in setting up research and clinical trials.”

As commercial trials are funded by pharmaceutical companies, they ultimately decide where they recruit from and where they are located.

However, the Welsh Government spends £19 million each year on research studies and is working with the body responsible for overseeing trials - Health and Care Research Wales - to increase access. 

Responding to the drop in the number of trials, Dr Nicola Williams from Health and Care Research Wales, said: “During Covid we had to be really focused about the studies that we were able to deliver within the NHS.

“We’ve seen a real recovery of those figures since then and I know that industry has confidence in the UK to deliver research and industry has confidence in Wales.”

Rowena Davies was an avid outdoor enthusiast before she developed ME. Credit: Shauna Chambers

Access to trials also depends on the type of condition and where in Wales a patient is located.

Rowena Davies from Tywyn developed ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome, after a period of ill health. 

She is now restricted to her bed with difficulty communicating, having previously been an active sports person with plans to travel around the world.

She now relies on several carers for everyday activities, one of which is her partner Shauna.

“Row’s not been offered to go on a clinical trial and I think there’s a real challenge for people that have severe ME because they are bedbound and housebound,” Shauna told ITV’s Wales This Week. 

“Particularly here in rural Wales, we’re very much out on our own and isolated from a lot of the help that can exist.”

Row (left) is now supported for by a number of carers, including her partner Shauna (right). Credit: Shauna Chambers

There is currently no cure for ME, and treatments vary in effectiveness from person to person. 

It has led many people with the condition to turn to alternative medication, often promoted online and on social media.

“Because you are so desperate to find answers, as soon as you hear the word ‘cure’ or ‘this got me better’ of course you’re going to listen,” Shauna continued. 

“That’s a really dangerous position to be in because you are very much at risk of trying hundreds of different things that you think could help.

“[You spend] lots of money on things that might not make any difference and in some cases, make people worse.”

The Welsh Government doesn’t set specific Welsh targets for trials, instead working towards UK targets.

Responding to concerns about a drop in the number of trials, a spokesperson for the Welsh Government said: “We have increased our focus to increase access to clinical trials in Wales.

“Health and Care Research Wales is working closely with both the NHS and industry to support an active growth over the coming years.

“It is working on a number of initiatives to enable individuals to learn about and be given the opportunity to participate in clinical trials in and out of a health care setting. 

“As outlined in our last annual report, we have 229 active commercially sponsored studies and 623 active non-commercial high-quality research studies.”

Watch Wales This Week Clinical Trials: Life in the Waiting Room on ITV 1 Wales on Tuesday, March 5, at 8pm and later online.