It was another incredibly busy and fulfilling week in May for the supporters of the ME Association and our community as a whole.
We had so many people getting involved – faces old and new… And from the looks of it, a great time was had by all!
This page celebrates all events, large and small, that took place in that crazy week. Thank you to everyone who did something, anything, to raise vital awareness of M.E.
Making the News…
Once again this year we couldn’t have made the news and had such an impact outside of our immediate community, if it hadn’t been for your willingness to share your experiences and engage with our social media campaign.
We succeeded in getting as many of your stories into the news-media and onto our website blog and social media platforms as we could.
This year’s efforts were led by Hayley Date, Clare Norton, Nicola Ingram, Katy Beardsworth, Milly Lowsley, Ali McNamara, Hannah Grundy, Gemma Corvalan, Emma Donnelly, Jo Moss and Helen Wood.
Medical contributions came from Dr Charles Shepherd and Dr Nigel Speight, ME Association Medical Advisers, and we featured special blogs from Helen McLean, Rog Warner, Kristian Legg and Gabrielle Coles.
You can access all the stories we featured and that made it into the news by visiting the website news archive for May 2019.
Jennifer Chittick merits a very special mention for the work she did raising awareness with her Facebook page: Screw ME.
The tragic news that Jennifer passed away only two weeks after she shared her story, came as a complete shock us all. She will be greatly missed by many in the community.
One of the highlights of the week was when Baz Hornsby arrived safely at Number 10, Downing Street, handing over his letter for the Prime Minister.
He’d ‘trekked’ the 100 miles or so from his home in Colchester by mobility scooter with his two dogs Remus and Suzie, and his partner Roni for company.
Despite her being rather busy with Brexit and other matters of state at the time, Theresa May found time to reply and thank him for his efforts.
Landmarks Go BLUE for ME
So many buildings and landmarks went blue across the world this year. We believe more than ever before…
These included the Spire Bridge in Sunderland, and Smeaton’s Tower in Plymouth, Sheffield Cathedral, and Norwich City Hall. And we understand that, further afield, Niagara Falls went blue too.
ME Association supporter Tracy Neilson is pictured below in front of Clifford Tower in York.
Karen Greenslade and her husband did one better, and went permanently blue, or rather, their shop ‘Humbug Gifts’ in Sidmouth did.
And, John and Linda Dipper took the BLUE theme to an international level, sharing their adventures and visiting world landmarks across Southeast Asia – that included the Taj Mahal.
Your Fundraising Photos
No ME Awareness Week is complete without Anna Redshaw and her Blue Sunday tea parties. Blue Sunday started out as a small idea in 2013 – inviting people to meet across cyberspace and sharing a cup of tea.
Since then the event has grown and grown. At last count, Anna’s events, and those run by others have been a huge hit and raised well over £13,000 for the ME Association.
According to Helen Darling in our Head Office, “Life is always better with cake!” and ME Association supporters would seem to agree with her.
Tea and cake events large and small took place up and down the country. Selina Greenow takes the prize for the prettiest tea party – this spread almost looks too good to eat!
Sharon Brockway galvanised the HC3S catering team for Hampshire County Council into supporting us again.
We are always hugely grateful to our company and workplace supporters for ME Awareness Week.
And it was great to see the wonderful Subway Resso in the East Midlands rising to the challenge again this year, with branch events – including a guest appearance by the ‘Smurfs’!
And if that wasn’t enough, they topped it all off with a Fast Food Football Match against area rivals at McDonalds, Burger King and KFC!
And speaking of physical challenges..
David Fardon – who managed to run not one, but 4 marathons in a month to raise awareness not so very long ago – went even further and ran a full “Epic Challenge” at the Ox races (2 x 10kms, then a 50 mile Ultra Marathon and a half marathon) in just one weekend! And all because his wife Sandra suffers from M.E.
And Nicola Coutts and family took the Blue theme to the extreme in the Bubble Run in Glasgow – which looks to me to have been incredible fun!
We had walkers for M.E. too…
Eleanor Sayer walked because she said, “I’ve had chronic fatigue syndrome for over a year, it’s been one of the hardest years. During this time I’ve had to miss a year of school and not been able to see my friends.”
“During the first 8 months of being ill I was bedridden almost always, this meant I was unable to get my education and see my valued friends and family.”
“It’s had a big impact on my life and I hope if I raise awareness and money like this it will help find a cure quicker and support others like me.”
Amy Voaden and her husband Sam successfully completed their Walk for M.E. They achieved 200 miles in the few weeks leading up to Amy’s birthday on ME Awareness Day itself – the 12th May!
Our new Go BLUE for ME shirts were a success!
Scott Read launched his 1000-mile challenge for M.E. He’s charting his progress on his Facebook page. He and two friends will be running for the ME Association in March 2020 in the London Landmarks Half Marathon.
Our Go BLUE for M.E. T shirts also worked well with the blue hairstyles of the week – as modelled by Jo Hardstaff and Vanessa Pearce and Helen Matthews’ sons – who got into the spirit of things in advance of her garage sale.
And Tim Anfilogoff proudly sported his Go BLUE T shirt on his 60th birthday fundraising page.
Helen McLean kept us all calm and smiling through the whole week.
She produced some delightful YouTube videos of popular and classical music, themed around the colour blue (do click through and have a listen).
And then took some time out to join in Anna Redshaw’s tea party!
Hilary Best got into the action too – donating her own blue garter to her daughter Lucy ahead of her wedding to Ben the following month. Lucy and Ben asked for donations to the ME Association in lieu of presents.
Thank you to everyone who also did all you could to raise awareness about M.E. as well as funds for the ME Association.
Our posters, the graphics and campaign on social media went down well and you displayed them at home or helped to ensure they were shared them widely across cyberspace.
Many of you gave talks to churches, workmates, attended #MillionsMissing events and gave your stories to the press (see top of page).
You made ME Awareness Week 2019 extra special and helped ensure our message was heard even beyond the community.
Katie Hallows not only went BLUE but also organised a stall at Salford University. And Liz and Helen Wood took their regular spot again in the Mall at Cribbs Causeway in Bristol.
And our Fundraising Manager, Helen Hyland did her little bit too. As ME Awareness Day fell on a Sunday, she dragged her family to Glasgow for Scotland’s #MillionsMissing demonstration.
Neo, the ME Association Mascot, came along too and met the two Pandas. Why Pandas? Because there are more pandas in Scotland than specialist M.E. nurses!
It was a hugely emotional day, but Helen said she was so glad that she played her part, following non-other than Stuart Murdoch – M.E. sufferer and lead singer of Indie band, Belle and Sebastian – onto stage to sing during the ‘lie down protest’.
Helen sang a version of ‘Blowin’ in the Wind’ that had been re-written by M.E. sufferer Robert Saunders. She said that she didn’t realise, until she’d finished, that Robert’s sister was in the audience listening!
The lyrics are so poignant and resonate with many people who have M.E. or with those who witness the suffering of family members or friends.
It neatly summarises the reasons why we’ve all got to keep going and raise greater awareness of the issues – in the hope that one day, nobody will have to suffer because of M.E.
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.
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