Charity champions. We need them now more than ever! | 23 April 2020


by Tony Britton, Fundraising Manager, ME Association.

In every generation, there are people who stand out as supreme charity champions. In this day and age, the ME Association needs them more than ever. Here are two more of their stories…

The Pub Quiz – with Claire Ayshford-Smy

Claire Ayshford-Smy.

The great British Pub Quiz is alive and well – with Claire Ayshford-Smy running a highly successful one every week for the ME Association.

It used to be done down your local, with players sitting shoulder to shoulder in the lounge bar, in days not so long ago.

Amanda Sladdin ran a very impressive old-style one for us in The Black Swan near Harrogate at the end of February.

The tradition is now being kept warm and adapted to meet modern times on Zoom, the video conferencing platform.

“We all like to do a pub quiz and I’ve been running one for family and friends for the past five weeks,” Claire told us this week.

“Initially, I did it to bring people together for a bit of fun. But then we thought we could turn this into something useful for the charity and have something to show for it when things get back to normal.”

The Easter Quiz on Zoom.

A qualified secondary English teacher, who had to give up working when she went down with M.E. two years ago, Claire pops the questions at people who turn up to play in gorgeous hats and fancy dress.

They celebrated the arrival of the Easter bunny when they should – but they’ve also had an early Halloween and an even earlier Christmas!

Claire, who lives in Taunton with her daughters, Sophie aged 10 and 13-year-old Natalie, commented:

“One of the reasons I felt ‘qualified’ to run the quiz is that I know how it feels to be isolated. ME/CFS sufferers are often very isolated. We know what it’s like to be unable to partake in ‘normal’ life and have restrictions suddenly placed upon us.

“I’ve got used to being isolated but many people will really be struggling with not being able to work or socialise or care for their family and friends, and with having financial and health concerns suddenly out of their control. So, I hoped I could bring some normality, some socialisation and some structure to their week.”

Claire has recovered to the point where she now has about five hours a day in which to appear normal. But she’s had three M.E. crashes in the past two years and has to take care to pace herself.

“Anything I do beyond my baseline activity makes all my symptoms flare up and can lead to a relapse which can leave me unable to function for months”, she said.

“The quizzes last about two and a half hours and I had to learn from scratch how to run them online.  

“When we’re playing, I have to mute everybody on Zoom except the player I’m putting the question to. Otherwise, they’d all be talking over each other. It would be one loud babble.

“But, at the end when I announce the scores, I switch on everybody’s microphones and it’s just like being back in the pub again! It becomes lively and full of laughter.”

The ME Association is also very happy with what’s showing up on Claire’s fundraising page. Thank you so much, everybody who is supporting us!

The Hair Cut – with Helen Leonard-Williams

Helen’s hair has got to go!

Helen Leonard-Williams’ hair really is her crowning glory! The 19-year-old from Leicester has locks that tumble over her shoulders in glorious waves.

But not for much longer. She’s prepared to sacrifice them all to raise money for our Ramsay Research Fund – while gathering up her hair into a ponytail to send to the Little Princess Trust, who make wigs for children and young people undergoing cancer treatment.

Helen became very ill when she went down with M.E. two and a half years ago after having a heavy cold. She struggled through her A-levels but has had to put plans to go to university on hold. She still has severe pain and becomes extremely exhausted every single day.

“After the ponytail is cut off, I’ll then have to decide whether to leave what remains of my hair as it is or shave everything off. My mum’s not at all happy with the idea of that!” said Helen.

If you would like to give Helen a bit of Dutch courage, please donate to her fundraising page.

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!


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