I was diagnosed with Chronic Fatigue Syndrome, this name felt trivial given the pain I was in and the massive impact it had on my life. Chronically fatigued= always tired. Most people are always tired; new parents; people working full time; people with long commutes; people who party hard; people who binge-watch TV into the night… “in fact the fatigue that affects ME/CFS patients is as different from regular, end-of-the-day tiredness as Ebola is from the common cold.” The New Yorker.
One year earlier I had been a manager for a third sector organisation with responsibilities for projects with turnovers of around £1 million. I worked hard and loved my job. I had just got engaged. I had loads of friends and family all who I saw regularly. I enjoyed dancing, festivals, exploring the UK and overseas, camping, swimming, long walks, nutrition and eating well… I had a normal, rather full, life of someone in their 30s.
I had nasty sinusitis in January 2013 and never really got better. Six months of infections; tonsillitis, bronchitis… all the itises. I had a monster migraine that lasted 18 months. I felt poisoned. My brain felt swollen inside my skull. I ached all over, every moment of every day-like flu. Worse was an agonising pain in my thighs that kept me awake at night. I was exhausted – my eyes hurt. Even my eyelashes hurt. I slept fitfully and woke every morning feeling worse, unrefreshed by sleep. I lost a lot of cognitive ability; unable to think, speak articulately, and read. Eventually I become hyper sensitive to noise and light.
I tried everything. All the vitamins. All the alternative therapies. All the advice (yes, I am drinking enough water thank you). I altered my diet. I struggled to read the books well-meaning people gave me. I did everything the NHS’s patronising CFS self-help programme told me too. I tried graded exercise. I tried pacing. I tried resting. I tried not resting. I kept on keeping on, for a long time. I could barely walk upstairs but I struggled to work in a demanding job for a year. I am not a malingerer, nor a hypochondriac.
It seriously affected my quality of life. I could have lost everything without the support of my husband (I did manage to get married) and family. I lost my beloved job. I lost my identity. I lost the ability to listen to music. I lost shopping. I lost night life. I lost exercise. I lost my independence. My husband and I may have lost our dream of having a family. I was pretty much housebound for 3 years and still must limit my activities now.
I hate to be negative. Because I have gained from having this condition too; but that is a different story. But for now, I want to raise awareness about the illness that many survivors call M.E. and why I think that the name Chronic Fatigue Syndrome is stigmatising and trivialising, suggesting it’s psychosomatic. There is a new name in the states – Post-Exertional Malaise – not much better, is it? It sounds like a euphemism for lazybones.
M.E means Myalgic Encephalomyelitis. This means inflammation of the central nervous system. This reflects the physical and medical nature of the illness. It is classified by WHO as a neurological disorder. Miserably underfunded, (the NHS spends less than £1.6 million a year on research – that’s less than £6.60 per patient!) Patients are too often met with poor health care quality and medical scepticism. At last science is catching up with what patients has been trying to tell their doctors. It is real. And it is physical! In 2015 researchers at Columbia University discovered ‘the first robust physical evidence’ that ME is a biological illness rather than a psychological disorder. Here comes the science bit – concentrate! Scientists have proved that ME is an inflammation of the cytokines in the immune system, and that the disease has different stages.
Most with the illness do not have a voice, there are at least 250,000 people who are not living the lives they could have had; laying in dark rooms unable to fight their cause, unable to fundraise. Not everyone gets better. Thankfully I am on the mend. I intend to speak up about the illness to improve its perception, and to call for increased funds for urgent biomedical research. In times when members of the governing party are questioning the legitimacy of illnesses this is now more important than ever.