About M.E.
I was a teenager when I became ill. The doctors said they couldn’t find anything wrong with me. I was so tired all the time, yet my sleep was disturbed and no amount of rest made any difference. It was a struggle to get out of bed and little things like cleaning my teeth or brushing my hair took every ounce of energy I had. Whenever I tried to use any muscle, whether it was simply holding onto my toothbrush or climbing stairs, it was very painful. I couldn’t think straight - it was like I had a ‘fog’ on my brain. My memory and concentration were terrible and I struggled to find the words when I tried to speak.
I had to leave school and spent my days (and long sleepless nights) at home, mostly stuck in bed staring at the ceiling and listening to the radio. I tried to get outside and walk as far as I could each day. Summer days were the best as I could lie on the grass in the sunshine instead of my bed.
Fortunately my mother found a progressive GP-turned-homeopath who diagnosed M.E. What a relief! It was real and it had a name! At last maybe people would stop thinking it was all in my mind! His support was invaluable, especially in helping me to get my A-Levels followed by a university degree; though it required a lot of extra time to achieve both.
That was 30 years ago and, aside from official recognition, sadly there hasn’t been huge progress since. There is still little research or consensus regarding treatment, and no cure. I just learned to live with it.
What is M.E.?
M.E. stands for Myalgic Encephalomyelitis; it is also known as Chronic Fatigue Syndrome (CFS). M.E. is a chronic, fluctuating neurological condition. The main symptoms are severe, persistent fatigue not relieved by rest, and post-exertional malaise (the body and brain are unable to recover after expending even small amounts of energy). This triggers flare-ups in other symptoms which include joint and muscle pain, sleep disturbance, impaired concentration, thinking and memory (‘brain fog”).
M.E. affects one in 250 people in the UK and is more common in women. Incidence is higher in those aged 11-16 (one in 100) and it is the most common cause of long-term absence among school children. A quarter of sufferers are so severely ill that they are house- and/or bed-bound, unable to manage even basic self-care. The illness is estimated to cost the UK economy at least £3.3bn p.a., including healthcare costs, disability-related welfare payments, productivity losses and unpaid informal care. Yet the lack of understanding and awareness means sufferers and their carers can experience disbelief, and even discrimination, from friends, family, health and social care professionals, teachers, employers and colleagues. I was frequently told “You don’t look ill'“. Excitingly, just this week researchers at the Stanford School of Medicine devised an accurate blood test which will hopefully transform diagnosis and destigmatise the condition.
My recovery
In the last decade I became aware of therapies in the complementary sector, especially nutrition, which may provide symptom relief. After years of passive frustration, it was exciting and empowering to be able to do something to help myself. We all have to eat, but in doing so we make choices: either to feed disease or fight it. I started studying Nutritional Therapy at the College of Naturopathic Medicine in the hope that it would also give me the information and tools to find answers about ME: what causes it, what keeps it going and how nutrition may help. Along the way I gained so much more: not only a fascinating medical training but I also discovered and fell in love with what became my new career.
By applying what I learned together with further research and other alternative therapies, I have now reached a level of optimal health beyond my wildest dreams. We are each unique and what works for one of us, may not work for another. But of this I am sure: by making good choices when we eat (and drink), we are optimising the nutrients that our bodies need and minimising those things that do them harm, thereby helping our bodies to function at their best.
“Let food be thy medicine”
Action for ME is a UK charity which offers information and support for children, families and adults affected by ME. They campaign for improved care and support services, and fund biomedical research. They were there for me, especially at the beginning when information and support were scarce elsewhere, and I am eternally grateful. During my bedridden days, their magazine ‘InterAction’ reminded me that I was not suffering alone, even though I was always too “brain fogged” ever to read it! I am very excited to be working with them on a feature for its next issue - will post it when it comes out! There are lots of ways you can support their incredible work and make a difference including skydiving, running and cycling events.