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Women ‘suffer more from ME’, according to largest ever study into the disease | UK News

Not only are women far more likely to suffer from ME, they’re also more likely to have more symptoms, and co-occurring conditions that are more severe, according early results of the largest ever study into the disease.

The DecodeME study has so far recruited more than 17,000 people in the UK with a diagnosis of ME or myalgic encephalomyelitis – sometimes called chronic fatigue syndrome.

The researchers aim to study 20,000 DNA samples from this growing group to learn whether ME is partly genetic. Not only could it point to treatments but may also help de-mystify a neglected, and often maligned disease.

“For a long time, people didn’t even truly believe that this illness existed,” says study lead Professor Chris Ponting, from the University of Edinburgh.

“The fact this study is looking into the biological causes of ME… I think it will go a long way not just to help people find treatment eventually, but also debunk some of the really harmful stigma as well.”

It is estimated that more than 250,000 people in the UK have ME.

It leaves patients with debilitating and persistent exhaustion that’s made worse following normal levels of exertion.

But it also causes a wide range of other symptoms, conditions like brain fog, muscle pain even slurred speech. Many people are left house or bed bound by their illness.

Of the participants involved so far, more than 83% are women.

Women in the study were also significantly more likely to have one or more conditions such as irritable bowel syndrome, fibromyalgia or anaemia associated with their ME than men.

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Combining these findings with the genetic data they are collecting, the researchers hope to gain insights into why different groups of people are affected by ME, in what ways, and what its potential triggers could be.

Many cases of ME, for example, are preceded by an infection of some kind, a similar phenomenon as seen in people with long COVID.

‘A real stigma and mistreatment’

The initial findings, says Prof Ponting, suggest their genetic analysis will have to treat men and women differently. The gender bias may also point to why ME has been neglected for so long, despite affecting huge numbers of people.

There is good evidence from other diseases that less research and fewer drugs are devoted to those affecting women.

“At the real heart of this is [that there] has been a real stigma and mistreatment of people with ME for years,” says Sonya Chowdhury, chief executive of Action for ME.

The charity has coordinated recruitment for the study and hopes that this first large-scale investigation will change thinking about ME.

“Having the basic data and the basic science there means that researchers are more likely to take the illness seriously,” says Ms Chowdhury. “We should be shocked there hasn’t been investment in research for decades.”

Pippa Stacey was first diagnosed with ME at the age of 19 and now writes, blogs and campaigns about her illness.

She filmed herself giving her DNA sample for the DecodeME study and shared it with her 14,500 Instagram followers to encourage others to do the same.

“Knowing work of this magnitude is taking place – that in itself is a huge thing,” she says. ” I feel a level of hope that there’s something to reach for.”

Joe Wicks makes dedicated workout video for people with Parkinson’s disease | UK News

Fitness coach Joe Wicks has teamed up with the NHS to create a dedicated workout video for people with Parkinson’s disease.

Regular exercise has been shown to have a positive impact on the symptoms that can cause involuntary shaking of parts of the body, slow movement and stiff or inflexible muscles.

Wicks has worked with experts at St Thomas’ Hospital in London to help people with the condition exercise at home.

“I’m so passionate about making exercise accessible for all people, no matter their ability,” Wicks said.

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“It was great to come down to St Thomas’ Hospital to hear more about how exercise can help people with Parkinson’s manage their symptoms and to create this workout video tailored specifically for them.”

Milly Khan, a highly specialist neuro-physiotherapist at Guy’s and St Thomas’ NSH Foundation Trust, said: “Physical activity is a really important component of treatment for Parkinson’s and the condition shouldn’t be a barrier to being physically active.

“Having this specially created resource that people can do in the comfort of their own home will make a huge difference to not only the patients I see at St Thomas’, but those across the country.”

The specialised workout video has 10 different exercises put together by Wicks, known as The Body Coach, who was hailed for hosting daily PE lessons online during lockdown.

The exercise video for people with Parkinson’s is available free online on The Body Coach YouTube channel.

Kidney disease ‘could become public health emergency’ without more funding, charity warns | UK News

Kidney disease could become a public health emergency without more government funding, a charity has warned.

The illness already costs the UK economy £7bn a year, according to a new report by Kidney Research UK, and that could rise to £13.9bn in the next decade if no action is taken.

That covers the direct cost of treatment to the NHS, as well as money lost by those left unable to work.

The main factor which could drive up costs is an increase in demand for dialysis – a crucial treatment for patients who suffer kidney failure.

More than seven million people live with chronic kidney disease across the country, the charity estimates.

But that figure could rise, with people with diabetes, cardiovascular disease, and those who are obese most at risk.

The charity wants the government to commit £50m a year into kidney disease research – way up from the £17.7m its report says was provided in 2021-22.

NHS ‘risks being overwhelmed’

Kidney Research UK said the greater funding could be put towards developing better prevention strategies and treatment options, as well as earlier diagnosis.

Chief executive Sandra Currie said without it, the NHS “risks being overwhelmed with demand”.

“There is no cure for kidney disease, a transplant does not last a lifetime and dialysis patients face hours of gruelling treatment every week, taking them away from loved ones and making it harder to work,” she added.

“We know the only hope for stopping the growth of kidney disease and the increasing burden to the health system, the economy and to patients is better prevention strategies, earlier diagnosis and better treatment options, and yet kidney disease isn’t even included in NHS long-term strategic plans.”

A Department of Health and Social Care spokesman said the government is “committed” to improving services for patients living with kidney disease.

“We fund research for all aspects of health, including research into kidney disease, through the National Institute for Health and Care Research,” they added.

Doddie Weir, former Scotland rugby international, dies after lengthy battle with motor neurone disease | UK News

Former Scotland rugby international Doddie Weir has died at the age of 52 after a lengthy battle with motor neurone disease (MND).

His wife Kathy said he was a “true family man” and it was “difficult to put into words how much we will miss him”.

She said in a statement, released by Scotland Rugby: “Doddie was an inspirational force of nature.

“His unending energy and drive and his strength of character powered him through his rugby and business careers and, we believe, enabled him to fight the effects of MND for so many years.

“MND took so much from Doddie, but never his spirit and determination. Hamish, Angus, Ben and I would like to thank everyone for your support.”

Weir, who was six feet six, played as a forward and was known for crunching tackles and thunderous carries, winning his first cap for Scotland against Argentina in 1990.

The late BBC commentator, Bill McLaren, once famously described him as being “on the charge like a mad giraffe”.

After being diagnosed with MND he said he was going to “crack on”.

He told The Sunday Times: “I’ve not had a big melt, even at home, because I’m not sure it would help. Maybe the odd time in the car. But again I go back to my life. I’ve had a fantastic life. So crack on.”

Only a fortnight before his death, Weir was present as former professional rugby league player Kevin Sinfield set off on seven ultra marathons in seven days, raising more than £2m for MND charities.

He did not like the idea of resting. “If you don’t use it, you lose it,” he said.

“When you sit down and let it get to you, you disappear. I’ve always had a positive outlook. Do what you can do today and worry about tomorrow when it comes. And if it doesn’t come, then you’ve a bloody good time.”

Doddie Weir
Weir said he always had a ‘positive outlook’

The MND Association said that since sharing his diagnosis in 2017, Weir had “became an inspiration to many” by raising awareness and “campaigning tirelessly on behalf of those” with the disease.

He was born George Weir on 4 July, 1970.

Educated at Stewart’s Melville College in Edinburgh, he played for its first fifteen before moving to Melrose in 1991, where he won a hat-trick of Scottish Championships.

He later played for Newcastle Falcons, who described him as a “legend”, and Border Reivers.

He was capped for Scotland 61 times and helped his country to the 1999 Five Nations Championship.

Nicola Sturgeon said Weir’s death was “so terribly sad”.

Scotland’s first minister tweeted: “Doddie was one of our nation’s sporting legends, but the brave way he responded to MND surpassed anything ever achieved on the rugby pitch.

“He refused to let it dim his spirit and did so much to help others. My condolences to his loved ones.”

Modified herpes virus shows promise killing off cancer cells – with one patient seeing disease vanish | UK News

A modified herpes virus has shown promise killing off cancer cells – with one patient seeing the disease vanish entirely.

Patients were injected with a drug that was a weakened form of the cold sore virus – herpes simplex – that has been modified to kill tumours.

While more research is needed, it could offer a lifeline for those living with advanced-stage cancer.

Krzysztof Wojkowski, 39, a builder from West London, went from end-of-life care to being cancer free after joining the trial.

Mr Wojkowski was diagnosed with Mucoepidermoid carcinoma, a type of salivary gland cancer, in May 2017.

Despite multiple surgeries, he was told that there were no treatment options left, before being given the opportunity to join the RP2 trial at The Royal Marsden in 2020.

He said: “I was told there were no options left for me and I was receiving end of life care, it was devastating, so it was incredible to be given the chance to join the trial at The Royal Marsden, it was my final lifeline.

“I had injections every two weeks for five weeks which completely eradicated my cancer. I’ve been cancer free for two years now, it’s a true miracle, there is no other word to describe it.

“I’ve been able to work as a builder again and spend time with my family, there’s nothing I can’t do.”

The genetically engineered virus, which is injected directly into the tumours, is designed to have dual action – it multiplies inside cancer cells to burst them from within and it also blocks a protein known as CTLA-4, releasing the brakes on the immune system and increasing its ability to kill cancer cells.

Image: Carcinoma of salivary gland. Credit: Nephron, CC BY-SA 4.0, via Wikimedia Commons
Image: Carcinoma of salivary gland. Credit: Nephron, CC BY-SA 4.0, via Wikimedia Commons

Rare to see such promise in early trials

Three out of nine patients treated with RP2 saw their tumours shrink.

Seven out of 30 patients who received both RP2 and the immunotherapy nivolumab also benefitted from treatment.

In this group, four out of nine patients with melanoma skin cancer, two out of eight patients with the eye cancer uveal melanoma, and one out of three patients with head and neck cancer saw their cancer’s growth halt or shrink.

Of the seven patients receiving the combination who saw a benefit, six remained progression-free at 14 months.

It is rare to see such a good response rate in early-stage clinical trials, according to the study leader Professor Kevin Harrington, professor of biological cancer therapies at The Institute of Cancer Research, London, and consultant oncologist at The Royal Marsden NHS Foundation Trust.

He said: “Our study shows that a genetically engineered, cancer-killing virus can deliver a one-two punch against tumours – directly destroying cancer cells from within while also calling in the immune system against them.

“It is rare to see such good response rates in early-stage clinical trials, as their primary aim is to test treatment safety and they involve patients with very advanced cancers for whom current treatments have stopped working.

“Our initial trial findings suggest that a genetically engineered form of the herpes virus could potentially become a new treatment option for some patients with advanced cancers – including those who haven’t responded to other forms of immunotherapy.

“I am keen to see if we continue to see benefits as we treat increased numbers of patients.”

Exploiting the features of viruses

Professor Kristian Helin, Chief Executive of The Institute of Cancer Research, London, said it is possible to exploit some of the features of viruses.

They said: “Viruses are one of humanity’s oldest enemies, as we have all seen over the pandemic. But our new research suggests we can exploit some of the features that make them challenging adversaries to infect and kill cancer cells.

“It’s a small study but the initial findings are promising. I very much hope that as this research expands we see patients continue to benefit.”