Rebecca Ayling is on the hunt for a cure for ME…

“I was diagnosed with M.E when I was 13 years old. I had symptoms for a few years before this, but it took me those few years to be diagnosed because there is no criteria to be diagnosed with M.E. During this time, I felt like I wasn’t living, I was just existing. I was in my bedroom sensitive to light, noise and smells so I was unable to be around anyone else, unable to watch TV, unable to use a mobile phone, pretty much unable to do anything. I lost a lot of weight because I couldn’t eat because I always felt sick. I slept nearly 20 hours everyday. I had to leave school as my school didn’t believe I was ill and began court proceedings with my parents for my attendance. Luckily, the judge saw my medical records and instantly proved that I was ill and it was not mine nor my parents fault that my attendance was poor. This stress only made my illness worse so I left school. Thankfully, the removal of this stress helped me to improve enough to be able to do my GCSE’s at home. My parents had to fund these online courses, each costing £295. The LA refused to help fund any of my education from home. I was very grateful to manage to get 6 GCSE’s, 4 of these being grades A*-C. I have also managed to go to sixth form and do my A levels. I am on a part-time timetable and I have taken my A levels over a 3 year period. That’s my story. 

However, it’s important to note that I am only a moderate sufferer of M.E. There are people who suffer severely from M.E who are permanently bed bound. Recently, I had a 2 week period of being mostly bed bound and I couldn’t leave the house. This gave me a taste of what it really is like to have severe M.E. It made me realise just how cruel and heartless this illness is. It has no mercy. This is why I wanted to share my story and try and raise money for Invest in M.E who are currently carrying out research into the causes and possible treatment options for those M.E sufferers. 

Any donations, even £1 would mean the world to us.” Rebecca Ayling

Visit Rebecca’s justgiving page

BT Donation Doubler

Raise over £100 before 20th February and BT could match your fundraising up to £1000!
BT donation-doubler

Invest in ME Research (IiMER) recently registered with BT MyDonate, a fundraising platform with no set up fees or commission or monthly charges. You can simply donate direct to the charity or set up your own fundraising page.

BT wants to help out five fundraisers by matching their funds for their chosen charity up to the value of £1,000.

To support our cause, all you have to do is set up a BT MyDonate fundraising page for Invest in ME Research and raise £100 by midnight on 20th February 2017 to be entered into the prize draw, or you could sponsor a fundraiser.

The £100 raised excludes gift aid, offline donations and donations made by the person who set up the fundraising page.

The Prize Draw is open to UK residents including employees of BT, their families or its agencies.

Want to help Invest in ME Research win a DD from BT?

Let’s do it for ME!

Read the full terms and conditions of the BT Donation Doubler here –

Invest in ME Research profile on BY MyDonate is here –
Thank you for your support!

Joanna is making a splash for IiMER!

“I personally value the quality of my life over how many years I live. If I could be guaranteed a healthy five years, with the same quality of life I had pre-ME, knowing I would die suddenly after the five years were up, I would choose those quality five years over what I have now. What I have now is possibly decades of simply existing in a sort of non-life, just monitoring my heart rate while waiting for the day I magically get better, or the day I die. A life in which I am mainly housebound, a life starved of human interaction, a life in pain with no relief, a life without hobbies, a life without being able to explore my interests, a life without the chance of ever finding a partner, a life without travel, a life without work, a life without spontaneity. Every now and then I become crippled by the fear, the confusion, the uncertainty, the just not knowing what to do for the best. The reason I don’t know is because no one knows, not even doctors know. When you have ME you are alone, alone without having a clue about what to do to get better, and this terrifies me. I can’t bear the thought of living to a grand old age no better than I am now.” Phoebe Boag –

Joanna Dixon is swimming a whopping 5km (200 lengths) in support of IiMER. The reason for her support is her sympathy for her friend Phoebe who suffers from ME and also runs the blog “puffins and penguins” (see above quote). 

To support Joanna and give people like her friend the chance to live visit

Campling Can!

Jon Campling 2017

Actor Jon Campling takes his Invest in ME Research ‘Can Do’ charity collection box along to various events around the country whilst also doing amazing awareness raising of Myalgic Encephalomyelitis.

The Hogwarts Express may be stoppable but this Death Eater definitely isn’t showing any signs of slowing down in his support of Invest in ME Research through 2017!

We will endeavour to keep up here with highlights from Jon and his fan-tastic supporters so give us a shout if we miss anything out!

Easy links below to follow on Twitter and you can also find Jon Campling Actor on Facebook and via his website at

Here’s a super article by Ginny Anderson in the Eastbourne Herald – Death Eater from Harry Potter films moves to Eastbourne.

Jon created a fundraising page on JustGiving to help celebrate his Mam’s 80th birthday on 5th March:

Audrey’s birthday coincided with the publication of a book by another champion for ME, Ian Gibson, and his friend Elaine Sherriffs, ‘Science, Politics, and ME‘. Jon’s wife Ali has ME and he describes some of her experience in his great Foreword to the book, which is available to buy on Amazon. (Please use this referral link to generate a donation to Invest in ME Research at no extra cost when you buy anything from Amazon).

Jon also raised funds to help celebrate his own birthday on 18th November:

On 1st December 2017 Jon launched his new fundraiser #WalkTall4ME here on JustGiving:

Heartfelt thanks to Jon Campling and all his amazing fans, friends and family supporting Invest in ME Research throughout the year!

And in case you missed it…

Our very own Sophie Tennent managed to meet the man himself.

Above is an example of Jon encouraging young ME sufferer Makayla Nunn – herself now officially a hero!

Many thanks to Jon Campling and all his fans and friends supporting Invest in ME Research throughout the year!

It’s Official – Makayla Nunn is a Hero!

Young ME sufferer Makayla Nunn receives Hero Award

mn nom

The Priory Community School Hero Campaign aims to reward and recognise students’ hard work and positive acts of kindness at school, home or in their community. Prizes were donated by Hutton Moor Leisure Centre.

Makayla was nominated for her outstanding efforts to raise awareness
and funds for the volunteer-run charity ‘Invest in ME Research‘.

ME is the neurological illness that Makayla herself is diagnosed with –
Myalgic Encephalomyelitis (World Health Organisation International
Classification of Diseases of the Nervous System ref. G.93.3).

“Makayla’s dedication to her cause is remarkable and she does what she
is able for the sake of others even less fortunate than herself,
including some sadly no longer with us.

Very brave for a little girl struck by chronic illness
at the tender age of 8 years old.

Makayla is a hero and a shining star.”

Congratulations to Makayla on a well-deserved award!

Makayla has been extra poorly recently so her little dog Marley is taking the reins this year by doing a (vet-approved) sponsored Swim for ME.

Meanwhile, click here to read all about our young hero’s various awareness and fundraising activities for Invest in ME Research.

Priory Community School also deserves recognition as a beacon of excellence in its support and understanding of students with ME as described in this article by Michelle Nunn on a Successful Start to Secondary School.

Well done all round on a super start to 2017!

mn award