Chronic fatigue syndrome, or myalgic encephalomyelitis (known as ME) is a long-term illness that affects more than 250,000 people in the UK, according to the ME Association. Despite the high numbers of sufferers – who are mostly women – it is considered a hidden disease and widely misunderstood.
The NHS says the most common symptom is extreme tiredness. People with ME may also experience sleep problems, muscle or joint pain, headaches, sore throat, flu-like symptoms, feeling dizzy or sick and fast or heart palpitations.
“It is an invisible illness,” says Dr Charles Shepherd, of the ME Association. “When you see people with ME, we might not always look ill, but when our symptoms flare, the effects are obvious. Our bodies are painfully sore and ‘brain fog’ causes confusion.”
It is not known what causes ME but there are a number of theories about how it may be triggered: viral infections such as glandular fever, bacterial infections, like pneumonia, problems with the immune system, a hormone imbalance, or mental health stresses and emotional trauma. Sufferers are also at higher risk of suicide.
We spoke to five women living with the illness about what they want others to know.
The symptoms go so far beyond tiredness.
Milly Lowsley, 13, from East Lothian in Scotland used to be a keen hockey player but is now effectively housebound and has been out of school since May 2018. “Physically, it’s like having weights on you all day long, or sprinting while having the flu,” she says. “I’m overly-sensitive to light so it can feel like my eyes are burning. Someone talking can feel like air horns. My mind is always foggy – once I forgot my own birthday. If you could feel death, I’d say it is living with this.”
ME can leave you unable to get out of bed.
Gemma Corvala, 31, from Cambridge was diagnosed with ME after a car crash in 2011. She went from doing finger pull-ups on a door frame to being unable to get out of bed. She’s now cared for by her husband Javier. “My days are generally spent in bed with my two little companion cats, as my husband works full time to support us. In the simplest of terms, I hate my body. It brings me nothing but hardship and pain. I am but a shell of my former self.”
It can leave you lonely and isolated.
Corvala says: “I now have no regular social life to speak off and have lost contact with most, if not all, of my friends. I cannot leave the house by myself as I rely on a wheelchair and spend most of my time in bed, apart from the odd trip to the cinema or to visit a handful of friends.” Hayley Date, 45, from Somerset, was struck down by ME on New Year’s Day in 2015 while out shopping. “I have become lonely, isolated and not able to do so many things,” she says. “Plans can never really be made because I haven’t got a clue whether I will be well enough.”
ME can sometimes be confused with depression.
Ali McNamara, 48 from Cambridge says that even after a series of tests, her GP couldn’t be sure whether she was suffering with depression or ME. “My GP told me pragmatically it could be one of two things: depression or ME. I’d suffered with depression in the past, so I knew it wasn’t that. Obviously I wasn’t happy to be feeling like this, but I wasn’t in the dark place true depression takes you to. So I was referred to an ME clinic, where I was diagnosed by a specialist.”
You can’t just beat it through exercise.
McNamara used to be a personal trainer before she developed ME so knows about the benefits of exercise on physical and mental health. But exercise actually makes her feel worse. “Exercise always used to make me feel better. If I was having an off day I knew that by working out my mood would improve, and any lethargy I might have would magically disappear. But then something strange began to happen, instead of making me feel better, exercise began to make me feel worse, and I was always tired. Now when I push myself to work out, I’d always feel awful the next day.”
Some doctors doubt the reality of ME symptoms.
Corvala says: “A lot still needs to be done. Mainly amongst GPs who still doubt the veracity of our symptoms and generally doubt patients and dismiss our struggles. I have had doctors tell me to drink more coffee … when I asked if there was anything I could do about my fatigue.”
If a doctor cannot accept that ME exists, it makes it more difficult for sufferers and the public in general to accept it, she argues. And Date agrees: “It is incredible to comprehend that some doctors still refuse to accept ME as a real medical condition, despite the countless stories of intense physical debility.”
ME can get better – only to them get worse again.
Hannah Grundy, 36 from Nottingham was diagnosed with ME in her late twenties, just months after starting a new job. “It’s a constant struggle and you never know when you’ll get worse again. Just as you come to terms with things you get a little glimmer of hope in the form of a slight improvement but then things go back to how they were before or worse, and you have to start all over again. I often feel like a 100-year-old trapped inside a young person’s body.”