It's not about me, it's about M.E.

Thank you for taking time out of your day to read our appeal.

Hello!

I’m Isabella/Bea

I am 23 years old and for the last three years, I have been recovered from M.E/CFS.

What is ME/CFS?

ME/CFS – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (find out more here)

My Story

In 2016 at the age of 14/15 I was diagnosed with CFS/ME which for me meant extreme fatigue, post-exertional malaise, persistent headaches, severe brain fog/cognitive dysfunction, dizziness, muscular aches, temperature fluctuations and a heightened sensitivity to light and noise. These symptoms occurred daily and frequently resulted in a ‘crash’ where I would be in bed for days at a time; where my mum would have to wash my hair and button up my shirt because I physically couldn’t.

After my initial diagnosis I was sent from one NHS clinic to another, using precious energy filling in form after form only to go into an appointment to be asked the exact same questions with no outcome. The feeling of being sat in a room with a doctor who ‘specialises’ in your condition but who you know doesn’t fully believe you is one that never goes away – it is insulting and shouldn’t be something that people have to experience on their journey of recovery. Throughout this time I had very little support from my school, I was socially isolated, and my school attendance was extremely low.

In 2017 I made the decision to move schools to complete my A-Levels and am very grateful for the support they provided. I was determined not to fall behind, even if that meant completing mock exams in my pyjamas, at home, in bed (true story)! Anything that meant that this debilitating illness would not stop me moving forward. During this time I came across the Optimum Health Clinic (OHC) – a clinic in London which specialises in M.E/CFS - in one of my many searches for anything that may help, in any way. I signed up to take part in the OHC three stage recovery programme which involved both nutritional appointments and a three day psychology programme in London. My treatment continued through my final year of sixth form and with the help of newly found friends taking lesson notes, keeping me up to date with everything and anything, and making me a gluten free/dairy free/sugar free/taste free (but beautifully decorated) birthday cake, I completed my A-Levels and got into University.

At the point that I went to University I was still suffering from quite severe symptoms but was slowly experiencing less ‘crashes’ as a result of the programme I was following. The first year of university was very hard as no one knew I was ill and then in March 2020 (aged 18) my university cancelled all work for first year students, we went into lockdown and my life changed forever! For the first time I had absolutely no responsibilities, no guilt about not participating, and no fear of missing anything. I was able to put all the energy I could muster into the practices I had started to work on over the past 2 years.

Late 2020/early 2021 (aged 19/20) was when I first realised that I could not remember the last time I had fully ‘crashed’ but at this point I wasn’t going to jinx it as I still had some lingering symptoms. It was a few months later when the headache that I had experienced every single day since the age of 14 finally wasn’t there anymore that I allowed myself to think ‘maybe I am recovering now’. From that point on my health improved month after month and since then I have graduated university, got a job, learnt to drive and who knows what is in store next – I still grieve the formative years that I lost but I am now lucky enough to have my life ahead of me, so I’m going to make the most of it.

Before I explain the details of our appeal I would like to take this opportunity to thank those truly incredible people who were there through everything and who consistently showed up; with love, patience and understanding. I know how challenging it can be to be around someone who is chronically ill, and I just want you to know you are very much appreciated. You know who you are and thank you.

(To my mama, without whom I would have sunk - I love you so very much).

Our Appeal

Me and my soon to be sister in law Cassie will be undertaking the National Three Peaks Challenge where we will tackle Ben Nevis (Scotland), Scafell Pike (England) and Snowdon (Wales) all within 24 hours. We have set our fundraising target at £1935 as this is the how much it costs for one person suffering from M.E/CFS to get access to the:

100% of the money raised will be donated to the Optimum Health Clinic Foundation who are currently fundraising for a randomised controlled trial into their protocol approaches, with the aim of NHS funding being available for those unable to afford support. This will give so many people suffering from M.E/CFS a chance at recovery. Any donations are hugely appreciated, and please do share this post with anyone you think might want to show support.

As a way of showing we have completed each climb I will be taking a photograph alongside a post box keyring at the top of each peak. This is symbolic for me as my walking target every week whilst ill was to walk to the local post box and back – this was only 700m in total and I didn’t always make it.

We both just want to thank everyone in advance for any support or donations you make towards this cause.

And remember, it’s all about the climb!

Isabella & Cassie

From This...

To This...

And Back Again...

If you are reading this and you suffer from M.E/CFS I would like to make you aware of a study that I am following closely regarding the DNA of M.E/CFS sufferers. The study (DecodeME) hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition. The deadline may have passed to be involved in the study by the time you read this, but it is still worth a look as it may just give you hope – and let you know someone is on your side!