Jo Rushton, now 56, was enjoying life as a recently qualified social worker and newlywed at 21 years old when she suddenly collapsed at work. “My legs just gave out and I was overcome with a huge wave of exhaustion and couldn’t move. I was taken home and fell into a deep sleep that I could barely rouse myself from for months. I remember lying there with a tickle on my nose and not having the energy or strength to move my arm to scratch it. It was like the signals to do so just weren’t there, and it was very frightening that what should have been an automatic response became an exhausting task of huge mental and physical effort.”

Jo visited her GP, who told her she was probably suffering from stress. “I really hoped that was true and I just needed a bit of a break. My husband was very supportive and took on a lot of the household management on top of his full-time job. We thought it was a temporary thing and just a rough patch that we would get through.”

As the months went on, Jo started to worry when she didn’t recover. “Blood tests always came back normal, but I knew there was something terribly, terribly wrong. I was used to doing regular exercise classes, going camping and hiking up mountains for fun, and now I couldn’t even get out of bed.” After several months, Jo met a nutritionist at a local health food store who told her he thought she might have ME.

“I went back to the doctor and they were happy to accept that was what I had, but they couldn’t prescribe anything for it. It was a relief to have my condition named and identified because I didn’t understand what was happening to my body, but it was also terrifying that there was no support or treatment available. I couldn’t bear to think this was going to be ruling every minute of every day for the rest of my life.” Jo immediately started researching ME.

“It was a bit like a treasure hunt trying to find that one thing that would make me feel better. We spent thousands on books and therapies – including osteopathic treatment, a very strict cleansing and detox diet with about 30 different supplements, acupuncture, massage, aromatherapy and reflexology – just trying to find that magic cure. It did help in that it made me feel I was doing something, but physically there wasn’t much difference at all.”

Over the years, Jo found living with ME increasingly difficult. “At 30 years old, I became pregnant with my daughter after being told I couldn’t get pregnant due to endometriosis and I found motherhood very challenging. I was under so much pressure and pushing to be the best mum I could possibly be, but I was grabbing every moment I could to sleep and there was no energy left for anything else.

“Over 20 years later, I still have no energy at all, my muscle strength is gone, and I don’t have any balance, so fall over quite a lot. I have severe vertigo, which means if I sit up for more than 30 minutes or stand up for two or three minutes, I feel very lightheaded and like I’m going to pass out. I am completely bedbound, so am on the iPad constantly trying to keep my brain occupied, while all my physical energy is geared towards being able to go the toilet, heat up a meal once a day and maybe occasionally tidy up around my bed.

I stopped working at 21 and was never able to return to my job, which was absolutely devastating, as I knew I wanted to be a social worker at the age of 12 to help people and make a difference in the world, and I worked so hard to achieve my dream. My husband and I also divorced around ten years ago, so I now live alone, and I had to sell my dog and rehome my horses as I couldn’t look after them. I’ve lost every single friend I had as it’s been difficult for them to understand when I’m constantly cancelling plans. I lost my family, my home, my identity, my hobbies, my role, my purpose – just everything that made up my life. It has brought on a huge depression and is something I struggle to come to terms with every day.”

One thing that has been a source of comfort and hope for Jo has been the support provided by Action for ME. “I first found out about the charity when I was researching ME, and their information guides helped me to understand the condition and also made me realise that other people were experiencing the same thing and it wasn’t just in my head – it was an identifiable thing that people were writing about.

I also got in touch with the charity’s information and support service by email and they would always respond to my questions really quickly with a comprehensive reply or provide all the links and resources to go to for the answers. They were a valuable resource at a time when I didn’t know where to turn, and sometimes just having someone to say, ‘Yes, how you are feeling is understandable and other people have felt that way too,’ was all I needed when I was surrounded by people who didn’t understand.”

Action for ME’s work around creating greater awareness and understanding of ME is something that means a lot to Jo. “It’s been so disheartening when I’ve been to doctors’ appointments and had to explain to them what ME is, and I have struggled with comments from carers who have said, ‘Oh, it must be nice to lie in bed all day,’ when all I want is to be out enjoying my life.

It gives me comfort that the charity is fighting to increase understanding and also to find a cure. There’s always that thought in the dark times that people are doing research and I just have to hang on until maybe somebody can find an answer. When that happens, it is going to be the best day of my life – it will be like winning the lottery a million times over.”

The charity’s online forum is also a lifeline for Jo. “The people on the forum have become my family, my tribe. There is always someone there who will give you encouragement, love, an answer and motivation to keep going, and it’s become a very important place to be able to express what I am feeling. It’s also been the one thing that has given me a sense of purpose. Being able to share my experiences and help someone else with a problem they are experiencing has made me feel I still have some value that I can offer to people.”

“Through the forum, I also found out about the charity’s chaplaincy and counselling services, which I now use on alternate weeks so that every week I know I have someone to talk to on the phone. I like having the two different perspectives – the counselling for the emotional side of things and the chaplain to talk to for the spiritual aspect.”

“The charity has really made a difference with its wide range of services, which fill a huge gap in what is available for people with ME. The staff constantly go above and beyond to make sure people are so cared for and looked after, and I value that so much.”

Total raised: £108,195

Action for ME will use the money raised in the Candis Big Give to give much needed support to people with ME – which is a long-term neurological disease that has a huge impact on the lives of more than 280,000 children and adults in the UK – via its helplines, peer support services, advocacy support and healthcare, and to invest in critical research to improve treatments and understanding.

The charity’s information and guidance service is available for anyone to phone up and get access to any kind of support. This might be about housing, accessing healthcare, accessing education or any number of issues. The healthcare service provides holistic healthcare through doctors, physiotherapists, counsellors and multi-faith chaplains. The charity also provides a wide range of resources on its website so people can access information and support at a time when they need it most.

The charity will also continue to work with doctors, politicians and others to raise awareness and understanding of ME and its impact, and to fund research into ME.

It has set up a genetic centre of excellence with Edinburgh University and is currently funding its research work through this initiative, which includes a two-year fellowship. Its research work is very focused on finding a diagnostic test – as getting a diagnosis can be difficult for people with ME – and also finding treatments.

Please visit actionforme.org.uk or phone 0117 927 9551 for more information.

WHAT ACTION FOR ME MEANS TO ME

Sonya Chowdhury, CEO for Action for ME, explains why the work of the charity is so important

“I remember at my first interview with Action for ME almost 11 years ago, meeting the team and hearing stories about the work they were doing and the experiences people with ME had – the lack of access to support and services and lack of research – and I felt there was so much to do for a group of people who were so invisible.

I felt embarrassed that I had known so little about the condition and came away from the interview really wanting the job. A year after I joined the charity, my 11-year-old son got a chest infection and didn’t recover, and he has been living with ME now for more than ten years. Having learnt so much about ME and having this personal experience, I feel extremely passionate about the work we do.

My job as CEO involves making sure we deliver on all our aims and that the team is supported to do the best job they can. I also play a part in engaging with our donors, press and media, and I am very involved on the research side, working with colleagues to co-lead the world’s largest ME DNA study, DecodeME, and looking at how we can accelerate current research.

People with ME are so ill, they can be hidden in our society and often forgotten. Both children and adults with ME have told us isolation is one of the biggest things they struggle with, and people with ME are six times more likely to attempt suicide than the general population. I have heard the charity repeatedly referred to as a lifeline and a beacon of hope to the people who use our service, as just having someone to listen and provide support can make a massive difference. People with ME need hope that things will change, but they also deserve to see change taking place, and as a charity, we are working to make sure that happens. I feel privileged to be a part of that and to have the chance to work to change things for the future.”