Petition for more research funds for M.E.

The health struggles of a 10-year-old Plymouth schoolgirl have prompted the launch of a nationwide petition calling on Parliament to act on the growing problem of chronic fatigue syndrome.

Shannon Tiday, 10, fronts the Listen To M.E. petition

Following media reports – including in this newspaper – on the plight of brave Shannon Tiday and her fight against Myalgic Encephalomyelitis (M.E.), pressure is to be brought on MPs to action more funding for research into the illness
that affects at least a quarter of a million people of all ages in the UK. The aim of the official campaign –
called ‘Listen to M.E.’ – is to force a debate on the problem in the House of Commons. If the petition is signed by 100,000 supporters, MPs will be obliged, by law, to hold a debate.

The move for greater awareness of M.E. and more funding for research into the cause of and a cure for the mystery illness was launched this week by Shannon’s mother Sharon Tiday following a flood of support on social media for Shannon and other sufferers.

Shannon hit the news after a video she made on M.E. went viral, with people from all over the world backing her protest that her debilitating condition cannot be treated as a psychological illness, a claim made by supporters of a controversial treatment for M.E. known as the Lightning Process.

Sharon Tiday said: “It is becoming an amazing journey since we filmed the video to raise awareness about our disagreement on the Lightning Process and it gave us an amazing media platform to get awareness for M.E. out there.

“Since the publication in the Sun- day Independent of a powerful article that was inspired by Shannon we have had incredible feedback and this is now going to be a campaign to get the M.E. voices heard.”

The campaign and petition is especially centred on the problems of the numbers of children and young adults who are struck by M.E.

One supporter, Michelle Nunn of Bristol, posted on social media: “My daughter was diagnosed at eight and she’s just turned 14. She received an award from her school as she’s raised over £4,000 for research into M.E. I couldn’t be more proud of her, not only for living with this illness but for her attitude.”

Another young sufferer, Alice Pinder, told Sharon on Facebook: “What you are doing is amazing. I would like people to know that it’s not all in my head and that no amount of ‘positive thinking’ is ever going to make it go away.

“And that when I do go out with my make up on and look well it doesn’t mean that I feel it. I want people to know the effort it takes to be able to achieve that, the days before and after of doing absolutely nothing just so I can achieve a few hours of normality out of the house before the resting starts again.

“I want people to know that staying at home all day watching Netflix is not all it’s cracked up to be, the novelty wears off very quickly.

“We need people to know that we so desperately need a cure. A real, scientific, biological cure that will tell us what is wrong with our bod- ies and correct that.”

The petition will be published on the official Parliament page at The Listen To M.E. petition reads: “Myalgic encephalomyelitis needs more funding for research, awareness and support.

“There are 250,000 men, women and children in the UK suffering from ME. While other illnesses get support, sufferers are told it is a psychological illness and they are offered a variety of therapies. But the answers lie with the Biomedical scientists who need more funding to find a cause and a cure.”

This article first appeared in the Independent. To get the latest articles when they appear, buy the print edition every Sunday or subscribe to our online edition HERE.