May is ME awareness month. I try to raise awareness all year around, mostly on my Instagram @bodypositivepear, but I’m making a Special Effort this month to write a piece on it, so from the floor of my living room, whilst wearing fluffy penguin slippers and listening to the “It Follows” soundtrack, I shall bring you a fact-heavy piece on ME/CFS, which I desperately hope you will read in order to understand more about this devastating illness and the effect it can have on different individuals.
I was diagnosed with ME/CFS in December 2018, and can trace my illness back to between 1 and 5 years before that. ME stands for Myalgic Encephalomyelitus (yes it took me a Google of “how to say” before I could pronounce it properly) and CFS sounds for Chronic Fatigue Syndrome. They are used interchangeably which is confusing and no one with it likes the term CFS as it implies you’re, you know, just a bit tired. It’s difficult to pinpoint exactly when I started experiencing symptoms as I can identify feeling this way during the final year of my anorexia recovery (7 years ago) but managed to live my life fairly normally until around 2yrs before I was diagnosed – although until fairly near my diagnosis I didn’t even consider that I might have ME. Doctors are often not trained to identify ME, and this means that many of those with ME have to do their own research and then present the idea to their GP – something I had to do myself.
Many people develop ME/CFS after having a viral infection, and never recover. Others develop ME after experiencing physical or mental trauma. The causes and workings of ME are unclear and links between ME and various systems within the body have been found in various studies, but there are no definite answers for those suffering with ME, and there is no cure. Treatment is limited to pacing, and pain and sleep medication. “Pacing is an activity management strategy to help ME/CFS patients limit the number and severity of relapses while remaining as active as possible. First described by health psychologist Ellen Goudsmit in 1989, it gives patients the advice to: “do as much as you can within your limits”.” – more on this here. Simply put, those with ME must find out how much activity they can do each day without causing a flare up – a complex balancing act that takes a hell of a lot of practice, and it doesn’t always work regardless of how hard you try, because life is unpredictable, and you can’t account for everything that might happen or need to be done in a day.
Not everyone experiences the same symptoms, and sufferers of ME/CFS have the illness in varying degrees of severity. I am writing as a “mild” sufferer of ME, though it is an illness where even the “mild” form of it affects everything in your life. 25% of people with ME have a severe form of the illness, leaving them housebound or bedbound. These people are generally only able to perform very basic tasks and need to have someone to care for them. Those with the most severe form of ME experience unbearable suffering that has at times resulted in death, either from complications associated with ME, or by suicide. Those with the most severe forms of ME are entirely bedbound, have extreme sensitivities to light, sound, and touch, and are sometimes unable to swallow or talk, resulting in tube feeding and without the ability to communicate with their loved ones. These people live with an extremely poor quality of life, yet many people don’t even know that this disease exists, let alone that it can affect people so severely. Those with moderate ME have reduced mobility and are restricted in all activities of daily living. Their symptoms can lessen and worsen in highs and lows. People with moderate ME are nearly always unable to work or go to school. Those with mild ME, like myself, are generally mobile and can care for themselves (although they may need to ask partners, friends, or family members to help them out then they are experience a flare up in symptoms). Most of us with mild ME/CFS are able to continue working, but for the majority this will be part time and will come at great expense of social activities and the pursuit of hobbies. Most people with mild ME will still end up having to take days off work due to flare ups, and will have to have a rigid routine involving lots of rest in order to be able to work at all. ME affects women more than men, in an approximate ratio of 4:1, which mirrors those diagnosed with other chronic illnesses.
ME/CFS is not “being tired”. Engaging in normal physical or mental activities, or a combination of activities, can leave people with ME feeling utterly debilitated. Those with very severe ME may find that turning over in bed leaves them feeling horrific. In those with mild ME, it may be taking a walk or doing household chores. The impact of doing what healthy people would see as normal activities can be felt straightaway, but a lot of the time it can take 24-72hrs to kick in, and is not significantly improved by resting. This key feature of the way ME affects people is called post-exertional malaise. The main symptom felt is extreme fatigue, which doesn’t feel like just being tired. It feels like your bones are made of lead. It feels like your blood has turned to tar. The symptoms get worse the more you try to sit and hold your head up, so you have to lie down. It feels like the life has been sucked out of every fibre of your being, leaving you devoid of all energy. Alongside the fatigue is a whole range of other symptoms that flare up alongside the fatigue. These are not all experienced by everyone with ME, but most people will have a large range of them. These are (and I’ve created a visually stimulating slideshow so you don’t get too bored by the overwhelming amount of information I am providing- images by Colourblind_Zebra on Instagram):
When pain is the predominant issue, this can sometimes be another chronic illness called fibromyalgia, which has similar symptoms to ME, but where pain rather than fatigue is the main symptom present. People with one chronic illness can often have one or more other chronic illnesses at the same time, so fibromyalgia and ME can be diagnosed simultaneously.
Mental health can also be affected by those with ME/CFS. Frustration, anxiety, low mood and depression are some of the mental health issue that those with ME can experience as a result of having to cope with the impact of the condition and its symptoms. This can be a result of discrimination, stigma, loss of identity, loss of loved ones for varying reasons, loss of independence, and loss of ability to take part in life as actively as before developing ME, or at all, as well as having to deal with the horrendous physical symptoms. Not only does ME affect people’s health in a drastic way, those who suffer from the disease face discrimination and disbelief at the hands of friends, family, health and social care professionals and employers, due to the lack of understanding about the illness. There are many people – even health professionals – who believe that ME/CFS is a psychological disorder and “all in their heads” even when it is proven to be a physical, neurological illness.
ME affects approximately 1 in every 250 people. 250,000 people in the UK are estimated to suffer from ME: 17 million people worldwide. By comparison, over 100,000 people in the UK have MS but it receives 20 times the funding that ME does. Ataxia telangiectasia affects about 1,200 people in the UK compared to the 250,000 estimated to have ME/CFS, yet its research funding is almost twice as large.
While the prevalence of a disease is only one of the factors determining its level of research funding (7.6% of males and 18.3% of females of all people get migraines, for example), funding for ME/CFS is nevertheless sparse compared with comparable conditions. This is particularly surprising given research which indicates that people ME/CFS experience high levels of functional impairment across physical and mental domains, scoring lower overall on health-related quality of life tests than most other chronic conditions, including lung disease, depression, heart disease and diabetes. Researchers have concluded that “quality of life is particularly and uniquely disrupted” in ME/CFS and that patients are, on the whole, not able to retain their previous capacity to remain active and perform roles in society. For example, the Dimensions database shows that of the total spent on research into chronic pain (£3.5 billion based on RCDC Pain Research category), only 1% was awarded for ME/CFS research. As previously stated in this report, ME/CFS is at least as disabling as many other chronic illnesses and severely impacts on patients’ quality of life… A 2014 ME/CFS charity survey identified that less than one in 10 people with M.E./CFS were in fulltime paid work, education or training and only 14% in part-time paid work, education or training…46% of GPs report that ME/CFS is the top illness group for which they have difficulty in making referrals with 30% reporting concern that ME/CFS treatments as the most likely to be excluded from the NHS in the next five years; ME/CFS was at the top of the list with infertility. (link for information on funding here).
With the coronavirus lockdown starting to ease, don’t forget those with ME/CFS and other chronic illnesses who remain bedbound, housebound, or with a significantly diminished ability to engage in normal life. Because when life goes back to normal and you start to enjoy the things you once did, there are many of us who will still be unable to join in with life as much as you can, if at all.
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