What is Myalgic Encephalomyelitis (ME)?
This a question I’ve answered often during the 3 and a half years I’ve lived with this illness; asked by friends, family, teachers, peers, neighbours and even strangers on the internet. You’d think by now I would have a concise but informative response to the question, but the truth is I never know how to explain the reality of this illness, I can’t find a way to convey what living with it is really like. There’s the facts, the statistics, the bare bones of information you can find from a quick google search; there’s the controversy surrounding the illness, the selective media coverage, the condemning of flawed studies by some scientists and the passiveness of others. Then there’s the more personal level of explanation: the real stories of patients; the individual struggles; the reminder that every person who makes up those large numbers we see in statistics is someone with a life, a life with loved ones and hopes and dreams, with careers cut short and ambitions put on hold; someone whose life has been turned upside down by this illness.
I never know what the right approach is. I try to think of what words might have the greatest impact in helping people comprehend just how awful this illness can be, weighing up the benefits of leaning more heavily on facts or on emotiveness. I don’t know how best to make you understand, but I can try.
I can reel off a list of symptoms: constant fatigue; chronic pain; nausea; migraines & headaches; cognitive impairment — causing things short term memory loss, speech problems, difficulty following conversations or instructions and difficulty reading; dizziness; weakness; orthostatic intolerance — the inability to be, or intolerance to being, upright; insomnia and/or hypersomnia, inability to regulate body temperature; muscle spasms — just some of the 60+ recognised symptoms that ME patients experience, all of which are worsened after activity.
I can share the statistics: that approximately 250,000 people in the UK have ME, with some estimates of up to 20 million sufferers worldwide; and 25% of these sufferers are classed as severely affected: meaning they experience a level of disability so profound that they are mostly housebound or bedbound. I could tell you that a small number of patients are so severely ill that they cannot eat or breathe by themselves, so they rely on feeding tubes and oxygen masks, unable to communicate or engage in any activity.
I can inform you that there is no effective treatment for this illness, and that psychologists continue to lobby to hold domain over this condition, even though hundreds of studies have shown marked physiological abnormalities in patients with ME. Health service providers desperately cling to the notion that ME can be treated through behavioural therapy and graded exercise, even though the very study they use to back up these claims — referred to as the PACE trial — shows that this approach worsened more patients than it helped, and that objective outsiders, such as research scientists, have publicly condemned this study for its bias. I could tell you that the rare occasions that ME actually makes the news are usually instigated by someone rehashing this flawed study to inform us that ME has a cure which the NHS offers. The NHS gets painted as the hero and the public can go back to forgetting about ME sufferers because they believe we are getting treatment and therefore don’t need their help, despite the fact we desperately do.
I could tell you that I often feel I’ve suffered more at the hands of healthcare professionals than I have been helped, and that I have panic attacks before appointments because I’m so scared of the dismissal I often face. I could tell you about the ten different medications I take daily, in an attempt experience some relief from the more manageable of my symptoms. I could talk about how, at nineteen, I am dependent on opiates because they are the only things that can begin to touch my pain, and how I’m also reliant medication to be able to sleep, and on another one to be able to eat. I could try to explain how these medications are the only things that keep my quality of life somewhat bearable, and that without them I don’t know how long I’d be able to go on, but then again, that probably sounds a little too melodramatic for general consumption.
I often wonder if trying to convey the impact this illness has on my life is the right approach, because I’m wary of sounding like I’m looking for pity, which is the last thing I want. However, if I don’t talk about my reality I’m just another number, one person in a sea of millions covered by the statistics. So maybe I should tell you about how, at my sickest, I had to be spoon-fed, and someone had to brush my teeth for me, and I required help to wash or get changed or even just sit up for a second to move around in bed, and how listening to an audiobook was often the extent of the activity I could tolerate. You should probably also know that while I have made small but steady improvements over the last year, and I’m now able to do many of those things alone, my life is still lived almost entirely in the two metres squered area of my bed, where I have spent the last two and a half years. I remain too unwell to leave my house, something I’ve only done one time since November 2014, which was only to be admitted to hospital in June 2015, for which I required a bed in an ambulance to get me there, and even with special requirements the admission was responsible for a terrifying decline in my health. These days, I find that I hardly remember what it feels like to walk barefoot in the grass, or feel breeze against bare skin, or bask in the warmth of the sun, and I long for a future where those things are possible again.
Maybe I should tell you what this illness has taken from me, besides the ability to walk or leave my house. It took away my chance to sit my A-levels, and more painfully it took away the option of starting university last September, a dream I’ve had since I was 6 years old; a dream that was on track to come true, with 4 A*s predicted at A-level, and the belief by many that I was on track to achieve the more ambitious dream of attending Oxbridge. It took away my chance to finish school alongside the people I’d known since I was 11, my chance to say goodbye to my peers and teachers, and to go travelling with my friends once school was over. I missed out on visiting newborn additions to my family, and opportunities to visit some of my older relatives, leaving me fearing the possibility they may pass away before I can see them again.
While my peers have spent the past couple of years studying, applying for jobs, going on dates, visiting different countries, meeting new people, falling in love (and out of it again), attending weddings (and funerals), going dancing on Saturday nights, kissing strangers and making so many different memories, I have been lying here — living my life in my bed. I’ve missed out on three years of being a typical teenager and having all kinds of experiences that would have had the potential to shape the person I’ve become. Instead, I’ve been forced into a situation I have little-to-no control over, and face the undeniable challenge of making sure this situation only has positive impacts on who I become.
I’m not saying my life is a bad one. In fact, I’m doing a pretty good job at making the most of what I’ve got, if I can say so myself, but I deserve a chance to live outside these four walls. I, and the 20 million other ME sufferers worldwide, deserve some form of treatment; we deserve a hope of regaining functionality and being able to live the kind of lives we long to live. We deserve to have our suffering taken seriously, to have support within the healthcare profession, and ultimately to feel like we are not alone in our fight for better treatment.
Most of all, we deserve access to proper healthcare based in the findings comprehensive biomedical studies that would allow us to access a treatment that tackles the cause of this awful illness, rather than simply being left to do our best with symptom management alone. It’s certainly possible, we just need more people to want to make it possible.
We deserve help. We deserve treatment. We deserve hope.
Please consider honouring M.E Awareness Day by donating to Invest In ME — a charity dedicated to performing biomedical research into the cause of ME with the hope of finding a cure or effective treatment.