Did you know 8 to 14 May 2025 is ME Awareness Week? Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome), is a complex and chronic multi-systemic disease involving the brain, muscle, immune and neuro-endocrine (hormone producing) systems. It most often develops after an acute viral or bacterial infection from which people seem unable to fully recover.
What are the symptoms?
ME can cause many different symptoms, which can be triggered or worsened by any kind of effort or activity. Symptoms include flu-like malaise, sleep difficulties, brain fog and a profound fatigue that is unlike normal tiredness. People may also experience chronic pain, headaches, nausea, digestive problems, and sensitivity to light, sound and other stimuli. Symptoms come and go and can change or worsen with little warning, causing distress and disrupting people’s lives. ME/CFS is different for everyone. It can range from a milder illness to a severely disabling one that leaves some people housebound or bedbound. There is no clinical test for ME, it can only be diagnosed if a person has experienced all key symptoms consistently for an extended period and all other clinical testing has shown no other cause for symptoms.
Here’s my story…
I was 12 when I first became unwell. I don’t know for certain what the catalyst for my illness was but there was a combination of things that happened over a few months – I contracted a strange virus that caused an outbreak of painful boils across my body for several weeks and soon after had vaccinations for Meningitis and Hepatitis (the latter due to travel to North Africa). I was also a very busy pre-teen who didn’t have time to rest and was not interested in waiting to return to my usual schedule of activity after being unwell – this included weekly sessions for swimming, modern dance, two ballet classes, Girl Guides, Youth Group and musical show rehearsals alongside school and a very active social life. Looking back, I can see that my stamina was reducing, that I was becoming tired more easily, I knew I had swollen glands and a perpetual sore throat but just thought it would pass. However, one day I suddenly couldn’t stand, my knees would give way as soon as I put any pressure on them. I was given crutches to aid in walking, but this was still extremely difficult and after several weeks, declining energy, worsening health and multiple trips to the GP I was admitted to hospital. I was there for two weeks undergoing every test imaginable, eventually I was discharged (still unable to stand) and diagnosed as having ME. There is no treatment, only pain medication and a recommendation to learn how to pace yourself to manage your energy and limit the impact of symptoms. This meant my very active teenage life changed very quickly, giving up all my hobbies, my social life and even school attendance being something I had to limit.
There are no photos of me using a wheelchair or crutches, I often look tired but when that’s your normal no one really notices. I don’t mind talking about my health issues but I find it awkward to bring up with new people unless it comes up organically. From the outside most people wouldn’t know that I have lived with a chronic health condition for two-thirds of my life. I have a degree, drive and have always worked. What they potentially don’t know is that education was extremely difficult for me, I didn’t attend secondary school for my GCSE years, I self-taught from home in my own time using textbooks, at sixth-form College and University I had a note-taker in all my classes, extra time and breaks in exams. I didn’t attend any lectures or seminars in my final year at University as I was too unwell but I still graduated with a 2:1. I passed my driving test at 17 but stopped driving after a few years as I didn’t feel my concentration or reaction time was quick enough to be safe, I restarted driving about 5 years ago but I still assess my physical capabilities each time before I decide to get behind the wheel. I’ve always worked but never full-time, this is something I still struggle with as I have to make allowances for my health that conflict with my professional ambitions. I will often over-commit myself in a work setting to the detriment of my health and is something I still struggle to get right.
I have all the classic symptoms of ME and have had periods of extreme illness where I have been house-bound for months, unable to sit up let alone stand and barely able to eat. Over 25 years my health has fluctuated significantly, never knowing what is going to cause additional pain, exhaustion or potentially a full-on relapse that takes months to return to my standard level of functioning. Fortunately, I have not had a severe relapse for a couple of years now and my crutches and wheelchair are happily gathering dust, although my walking stick does get the occasional airing still! On a day-to-day basis my health issues do have a significant impact on my life but what that is and how they affect me can really vary. The usual things I deal with are extreme fatigue, brain fog and dysphasia, consistent headaches, disrupted sleep, hypersomnia, joint/muscle pain and light sensitivity (its rare to see me outside without sunglasses – even in the depths of winter!). I have temperature hypersensitivity which means I have very poor temperature control so when I get cold it can take hours for me to warm up but also that I overheat very easily too. I have the most vivid dreams which I only recently discovered is a relatively common ME symptom. I am extremely sensitive to smells and can’t use any chemical or perfume-based products in my home or on myself (my worst nightmare is being stuck on a train or aeroplane next to someone wearing strong aftershave or eating something with cheese!). This also means I don’t drink alcohol and have sensitivities to certain foods. I experience neuromuscular symptoms which include unexplained muscle twitching or spasms, and I have orthostatic intolerance which can include dizziness, palpitations and nausea. When my brain-fog and dysphasia is particularly bad it can be very difficult for me to follow a conversation, articulate a thought or comprehensively answer a question.
Balancing work and home life
I do my best to balance work and home life, the days I don’t work are mostly spent resting at home so that I have energy to do social things at the weekend. Over the years I have tried a multitude of things to ease my symptoms but I’m well aware there is no ‘fix’ or easy answer. I have learnt to pace myself; I have to accept my limitations and work within them with the intention of maintaining the status-quo. I still socialise with friends, attend events and visit new places but I have to factor in additional time to rest. I work and also volunteer but have taken on roles that are flexible, home-based and part-time. I exercise when I can within the constraints of my energy levels and what has the lowest physical impact – yoga, swimming and cycling (electric bike to make it that bit easier!) but more often stick to sedentary hobbies. The phrase often repeated to me and I try to live by is ‘be kind to yourself’, its probably something we should aspire to do as we are all our own worst critics. When I am frustrated by my illness I have to remember I’m doing my best, I have limitations that I have no control over and I owe myself compassion.
There are plenty of unproved ‘treatments’ that do little more than cost a fortune and many that have significant harmful impact on those that pursue them. Even NICE guidance on treatment options published in 2007 were shown to be negatively impacting patients and causing harm, after a successful campaign from ME advocates the recommendations for management of the condition were amended in 2001. Medical research into this condition is limited although some progress is being made. I, along with 25,000 other people with ME, have submitted DNA to a research project called ‘Decode ME’ which is looking for common genetic markers amongst those affected that could help identify cause of the illness, which in turn could lead to diagnostic testing and potentially treatment. There is also now an All-Party Parliamentary Group on ME, formed in 2024, which ‘seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME’ which the ME Association supports as part of it’s current awareness campaign ‘ME/CFS: The Hidden Crisis’ through which they are lobbying the government to take action in improving research and medical support for those suffering in silence.
Follow this link for more information on ME
