Russell Fleming, Content Manager, ME Association.
Whatever you managed to do for ME Awareness Week, thank you! It has been our busiest yet – in so many ways – and while many events continue to take place, we thought you might appreciate a review of the progress that has been achieved.
Website and social media
We witnessed double the number of usual visitors to our website during last week, with more people not only following our blog posts but also viewing the What is ME? section and showing more interest in symptoms, diagnosis and treatment.
The ME Awareness Week page also proved a great success with three times as many people visiting compared to the week before, and many people taking advantage of our free leaflet download offers.
Either because they follow our page, or their friends do, or because posts were actively shared, or through the promotions we made; our week-end total reach exceeded 325,000 – an increase of 146% on the previous week!
An awesome team of fundraisers
A record number of fundraisers walked, ran, knitted, sang, baked and went the extra mile for M.E. and for the ME Association, and we remain in awe of them all.
Helen Hyland, our fundraising manager, is now working to catch up with each and every one, to make sure that they are OK, and to thank them for their magnificent efforts.
Keep an eye on our ME Awareness Week Events Guide, as we’ll update it with photographs of everything that went on, as soon as we can…
Our ME Awareness Go Blue for M.E. campaign will remain open for just a few more weeks. There are a great many more donations to be added to the page total, but if would like to help us perform our vital role, please donate anything you can afford.
While we continue to catch-up with the work we were unable to do because of the sheer volume, we’re also thinking about next year, and hoping to build on our experience and on the relationships we have established.
Please let us know what went right, how we did, what we might have done better, and what you’d like to see us doing more of next year. We are hear to listen and we want to do even better by you next year.
MEA Trustees and Staff
The JustWalk event at Goodwood was one of the best ever with a number of walker’s from the ME community helping to raise awareness of M.E. and funds for the ME Association.
Our chairman was there to meet and greet, and to see them all safely home. Neil commented, “Despite chill winds and occasional showers on the Sussex Downs for the Goodwood Charity Walk there were many smiling faces from the walkers for the ME Association.”
“Lots of chat and immediate bonding between the different groups, all coming together to walk for ME and raise money for our charity. The flapjacks and chocolate brownies were in the big demand as our walkers came across the line in the 10 Kilometre Walk. It really was a great day out and I’d like to thank everyone who was able to take part.”
Radio interviews, TV interviews, Unrest promotions (including at Stormont in Northern Ireland), ReMEmber Sussex conference, the Newsbeat ‘M.E. and me’ documentary, and The ME Show.
Helen has been really busy working with our many fundraisers and helping organise a multitude of events up and down the country.
She also worked with Stephen Kerr, MP, in Stirling on an initiative that will help raise awareness of M.E. and improve patient relationships with GPs.
And, she gave a very good speech at the #MillionsMissing demonstration in Edinburgh – talking about how M.E. had led to the death of her husband.
London #MillionsMissing demonstration.
Edinburgh #MillionsMissing demonstration, Gail Ross MSP event at Holyrood, and Unrest promotions.
Carol Monaghan and Gail Ross both launched parliamentary motions during ME Awareness Week designed to garner support from other MPs and MSPs.
Please contact your representative and ask them to support these motions. The greater the support, the greater the chance of a full debate on M.E. in Westminster.
Click either link below to find more information and a template letter:
- ‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP.
- ‘ME Awareness Week’ New Motion from Gail Ross, MSP, in the Scottish Parliament.
We don’t have a deadline for these motions, but they are unlikely to remain valid for more than a couple of weeks.
This is a summary of the media events that took place during (or just after) ME Awareness Week and where, for the majority, the ME Association had direct involvement. We worked hard to get your stories into the local and national media, and the articles that follow feature people who responded to our various appeals for case studies.
Perhaps our main achievement has been working with BBC Newsbeat who not only produced an excellent documentary, but also pushed for M.E. to appear on the radio and television. We were also delighted by the response to our new podcast series – The ME Show – which Gary Burgess launched with a riveting interview with Jen Brea (producer of the award-winning documentary, Unrest).
Getting our messages out to the news media, increases the chance that people beyond our own community become aware of the real M.E. We all then hope that this added awareness will help extinguish the stigma and the myths that surround M.E. and will lead to more understanding. With better understanding, perhaps we will see more people seeking a diagnosis, improvements in healthcare and even research funding.
It’s a lot to ask from a single week, but this year saw a greater level of involvement than ever before and I think it fair to say that media in general has been more receptive to our approaches and more willing to publish stories about the real M.E.
If you haven’t been able to watch it yet, then please do. It’s well worth your support. Please ‘like’ it on YouTube or watch it on BBC Newsbeat iPlayer. The more the video is viewed and shared, the higher it will feature in the rankings – and the greater the chances of other people becoming aware of M.E.
The ME Show with Gary Burgess got off to a very good start at the beginning of ME Awareness Week. We’ve given it its own dedicated page on our website, you can watch the episodes there – they will update automatically – or you can subscribe via iTunes or other podcast platforms.
‘Fantastic and vital!’
‘Beautifully-presented, insightful and much needed podcast which shines a light on the ME/CFS community and their suffering.’
Episode One: Jennifer Brea and Robert Saunders
Episode Two: Dr Charles Shepherd
Next Week: An interview with Carol Monaghan, MSP, MP who held the PACE trial debate recently in Westminster, has an early day motion in place and is seeking a full debate on issues relating to M.E.
- April summary of ME/CFS published research and research index update.
- Ramsay Research Fund invests in new study with ME/CFS Biobank to examine dysfunctional immune system and energy metabolism.
- University, work, accessibility and M.E. from Pippa Stacey.
- Ready, Steady, Go! Jane starts the blue madness of ME Awareness Week.
- Workwell Foundation: Graded exercise for ME/CFS is ‘detrimental to the health of patients and should not be recommended.’
- Focus on employment: Employees with M.E. can still offer a great deal by Joy Devlin.
- Showing the true face of M.E. – the Real M.E. Campaign.
- An island trek – Antje Rook is fundraising on behalf of her inspirational friend.
- University, work and M.E. by Ev Francis.
- Miss Teen Continental UK Finalist is a Model Fundraiser for M.E.
- 36 Subway branches lend their support to ME Awareness Week!
- Stephen Kerr MP launches M.E.-friendly GP initiative in Stirling with help from the ME Association.
- Spirit Radio: Interview with Dr Charles Shepherd, Hon. Medical Adviser, ME Association. Now a podcast.
- BBC Radio 1: Newsbeat – Interview with Dr Charles Shepherd x2
- BBC Radio Five Live: Interviews with Dr Charles Shepherd and with Dr Luis Nacul (ME/CFS Biobank).
- BBC Radio Five Live: Drive: Emma Donohoe (Newsbeat documentary presenter) and Jen Brea (Unrest producer) talk M.E. and speak with others affected by the disease.
- BBC Radio Five Live: Up All Night: Feature including interview with Dr Charles Shepherd.
- BBC Radio Newcastle
- BBC Radio Solent
- BBC Radio Oxfordshire
- BBC 1 Breakfast: Dr Eliana Lacerda (ME/CFS Biobank) and Emma Donohue (Newsbeat presenter).
- BBC 1 North West Tonight: Interview with Merryn Crofts’ mum and sister.
- ITV Granada Report: Moving video and interview with Merryn Crofts’ mum and sister.
- Channel 4 News: Interview with Cherry Millar’s mum and focus on London demonstration.
Print and Online Media
Still to come:
Keep an eye out for the following – though we will of course let you know when they’re published!
- New! magazine: feature ‘M.E. is real and devastating and more needs to be done’.
- Sunday Express: feature.
- BBC long-read: feature including the Real M.E. campaign – photos and stories.
- Outland magazine: opinion piece.
- Eastern Daily Press ‘‘Missing behind closed curtains for 12 years’ – Woman describes living with ME.’
- BBC Newsbeat: ‘Chronic fatigue syndrome treatment ‘should be withdrawn’.
- BBC Newsbeat: Chronic fatigue ‘I was held hostage by M.E.’
- The Sun: Devastating Disease – Family of girl killed by ME reveal how they were told by doctors it was all in her head, before it robbed her of everything.
- The Mirror: ‘Party animal’ young mum left unable to cook, clean or wash by disease some doctors don’t believe is real.
- Star & Crescent: M.E. Awareness Week: A Battle for Recognition in Healthcare.
- Southern Daily Echo: ‘I count my blessings’ – Meet the woman who high-fived her daughter after being diagnosed with ME.
- Huffington Post: Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be.
- Birmingham Mail: This illness is sucking the life out of millions of people – how to spot it and why it happens.
- Shropshire Live: Projection onto Theatre Severn to highlight ME Awareness.
- Liverpool Echo: Hairdresser who loved life says he feared he would die after developing ‘tightrope’ condition.
- Coventry Telegraph: Coventry student so ill she ‘couldn’t stand for longer than 5 minutes’ hosts charity knitathon.
- Newcastle Chronicle: Woman whose dance dreams were crushed by ME diagnosis present documentary busting ‘yuppie flu’ myth.
- The Mighty: Why I Started a ‘Knitathon’ to Raise Awareness and Funds for ME/CFS.
- The Mighty: 7 Ways to Support a Loved One With ME During ME Awareness Week.
- York Press: York landmarks to turn blue for ME Awareness Day.
- The Canary: On Saturday ‘millions’ of ‘missing’ people will reappear for the day.
- BBC Newsbeat: Millions Missing London Protest.
- The Gazette: Thornbury mother and daughter team hold ME awareness event.
- Rochdale Online: Merryn Crofts Missing Millions Manchester.
The ME Association
If you would like show your support for our vital work then please donate whatever you can afford to our ME Awareness Week Just Giving campaign – Go BLUE for ME.
If you want your donation to go towards research, then please leave a note in the comments and we will ensure it reaches the Ramsay Research Fund.
Help us continue to make the UK a better place for people with M.E.