Essentially Zoe

essentially local magazine July/August 2016
essentially local magazine
July/August 2016

Zoe Johnson’s story features in the fittingly Olympic July/August edition of Essentially Local in which the Milton Keynes magazine is celebrating amazing achievements, not just sporting ones, but of inspiring youngsters.

Nominated by her outreach tutor, Zoe was shortlisted for Young Role Model of the Year for her charity fundraising for Invest in ME, and the rest of her work towards her Duke of Edinburgh Bronze Award, and her huge efforts to do her online lessons. Sadly, Zoe was too ill to attend the award ceremony on 29th June, but heard from her outreach tutor that, although she didn’t win, she got a big cheer and will get a certificate sent to her in due course.

Mum Rachel Johnson said,
“She set herself a target of £250 at the beginning of all this and didn’t really think she’d get that. Today she is up to £2025 for Invest in ME, plus £129 from a cake stall for Smile for ME. I’m so proud of everything she has achieved when she is struggling so much – life with M.E is tough and we desperately need proper answers, so every penny helps and Zoe really wants to make a difference.”

The following article by Rachel Johnson was published on About My Area on ME Awareness Day 12th May 2016.

Zoe Johnson is raising money for Invest in M.E!

Can you help Zoe reach her target of £1500 for a sponsored haircut? All money raised is being donated to Invest in M.E (, a registered UK charity who fund biomedical research into M.E and train medical professionals. The hair is being donated to the Little Princess Trust who make wigs for children affected by hair loss due to cancer treatment.

Zoe is a 14 year old girl who has M.E (sometimes called Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome). This is a life-altering neuro-immune condition. There is no treatment, no cure and no clear prognosis. Some people do spontaneously recover after a period of time. Many people get better but never regain full health. And others are permanently disabled.

Prior to her illness, Zoe was an active Scout who loved hiking and camping. She played the flute and enjoyed street dance, climbing, sleepovers, family days out, spending time with friends, cinema, shopping – all the usual. She was enjoying life at secondary school, taking advantage of all the opportunities that came her way. Just a normal, happy, healthy girl…

In February 2014 she caught a flu-type infection and just didn’t recover. She hasn’t been full time at school since then and had to stop attending altogether in October 2015. She has had to stop all her favourite activities, even just spending time chatting with friends leaves her exhausted for a couple of days.

Zoe says “M.E has turned my life upside down. Its left me practically housebound and I have to use a wheelchair when I leave the house. It’s not just being a bit tired, its total exhaustion like you’ve got really bad flu. Not the ‘bit of a headache and runny nose’ type thing that people call flu, but the real flu that makes your whole body hurt so much that you can’t move and leaves your brain full of cotton wool so you can’t think straight. It also comes with a range of other debilitating symptoms such as nausea, palpitations, headaches, dizziness, inability to control body temperature and its quite tough emotionally too. The slightest exertion makes it all worse and nobody can tell me why I got this or when I will get better.”

However, despite all her difficulties, Zoe has started working towards her Duke of Edinburgh Bronze Award. For the Volunteering section she has chosen to spend six months raising awareness of M.E and fundraising for M.E charities. The first event is the sponsored haircut and she has other events planned over the next few months. Please support Zoe by making a donation via her page on JustGiving, and by sharing her story.


Zoe’s big haircut took place on 17th June – click here for more photos.

A further £895.78 was raised by a non-uniform day in October, bringing the total raised by Zoe Johnson in 2016 to a whopping £2965.78!

Well done Zoe and thanks to everyone supporting!