There are few debilitating conditions which are treated with the same flippancy than Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS).
Sneered about in comedy routines, and regularly dismissed as ‘just laziness’, the profound ways in which chronic fatigue impacts a person’s life are all too often misunderstood.
It’s still common to hear a person jokingly remark they ‘must have’ chronic fatigue syndrome if they are feeling a bit tired, perfectly illustrating the widespread underestimation of this cruel and life altering condition.
According to statistics published on the ME Action website, an estimated 15 to 30 million people worldwide suffer from ME/CFS, with 250,000 impacted in the UK alone. Sadly, only five per cent are estimated to recover, with the vast majority of sufferers left to manage their symptoms for many years.
ME/CFS is a complex multi-system disease which affects the brain, the autonomic nervous system, the cardiovascular system, the immune system and the gastrointestinal system.
And yet, sufferers are regularly still told it is ‘all in their head’, with some even accused of ‘fabricating’ their condition. Not only must they contend with the symptoms of their illness, they must also fight to have it taken seriously by those who have never experienced it.
1) Up, dressed and ok. (And having Prosecco at Xmas time.)
My life – a small amount of the time.
2) Crashed in bed just now. Exhausted, in pain, can't tolerate much light, can't think straight. Can't do anything.
My life – a huge amount of the time. pic.twitter.com/Cq4JoU5INV
— Anne Dean (@AnneDean10) January 17, 2019
The defining symptom of ME/CFS – and the one most widely known – is post-exertional malaise (PEM). This is often referred to as being a ‘crash’ after physical or mental exertion, with symptoms intensifying.
This is far more than when a person simply tires after exercise, and can be delayed by many hours after the person has exerted themselves.
For some individuals, this exertion could be something as slight as chatting with a friend or brushing their teeth. Sometimes just watching the television can feel too exhausting. As ME/CFS blogger and campaigner Jo Moss has put it, ‘I pay for every activity I do’.
The fatigue is just one aspect of the condition, with symptoms including joint pain,
dizziness, flu like symptoms, intolerance to sound, touch and light, muscle spasms, brain fog, sleep disturbances, weakness, tremors, headaches and migraines. In extreme cases, sufferers become so sick that they have to be fed through a tube.
1. Me on one of my rare occasions dressed up and out of the house. Something that took a week to recover from
2. Me a day after over exertion, showing my illness for once
Note that my to "recover" means to stabilise at my normal level of mostly housebound pic.twitter.com/vg6xoNoAK5
— Laura’s Pen (@lauras_pen) January 20, 2019
In the UK alone, the annual economic cost of ME/CFS is estimated to be at least £3.3 billion. It’s estimated that around 75 per cent of ME/CFS sufferers are unable to work, with 25 per cent left housebound or even confined to their beds.
This inability to partake in everyday life has also proved to be a serious issue in education. Children as young as five years of age have been diagnosed with the condition, with ME/CFS being the leading cause of long-term school absence.
Chief Executive at Action For ME, Sonya Chowdhury, told UNILAD:
Data so far from our Big Survey of life with M.E. in the UK – open until 2 August – shows that 90 per cent of people with M.E. have reduced their hours or stopped working altogether because of their condition – and one in four people with M.E. are so severely affected that they are house- or bed-bound.
Being too ill to work, as well as struggling to access appropriate health and social care support, further marginalizes these already vulnerable patients.
I think #TwoFacesofME is a really important hashtag. We’re only out and about at our best, and our (more frequent) worst often remains hidden. I’m convinced it’s why #MEcfs research funding is so low – the problem isn’t visible enough. I’m seriously ill in both these photos. pic.twitter.com/hNjK5140kv
— Jack Croxall (@JackCroxall) January 17, 2019
UNILAD spoke with Lucy Goodwill, a 29-year-old woman whose teaching ambitions were thwarted by her ME/CFS. Lucy was originally diagnosed with ME/CFS when she was just 15, but was still able to attend university and undertake teacher training.
Sadly, Lucy’s health began to deteriorate further as she began her career, and she began working with young people’s charities instead of teaching. However, the demands of her role left her completely burnt out, with every last bit of energy going into her work.
At the end of 2016, Lucy noticed her symptoms had worsened, and made the decision to take time off work before going freelance. It took her two years to get to a point where she could consistently work for three to four days a week.
Lucy told UNILAD:
I’m constantly confronted with the person I wish I could be and the work I wish I could do and what I’m actually able to cope with. I feel like a shadow version of myself an awful lot of the time.
A lot of people with chronic illnesses talk about the role of grief in their experience and I feel that very acutely with my career; so much of my sense of self comes from doing great work and I am regularly mourning the person I could have been if I was well.
It’s hard knowing you can never fulfill your potential. I know what I can do – what I did when I was better – so I feel the comparison pretty sharply.
Found another #twofacesofme pic from when Amy was a bridesmaid for her brother. #pwme let’s keep this trending to raise more awareness. @MEAssociation @TinaRodwell1 @TomKindlon @MEFoggyDog pic.twitter.com/BspCH1SQiZ
— Gill (@mecfsmum) February 28, 2019
Lucy believes there still isn’t enough public awareness about the realities of life with ME/CFS, and has previously felt concerned about opening up about her condition in the workplace.
I completely understand the disconnect and the challenge of understanding something so complex but it’s still frustrating. I hate the idea that to be believed I might have to perform illness when all I really want is to feel normal.
The trouble is that so much of our suffering goes on behind closed doors and I think people need to see that to really get it.
It’s ironic, really – I put on a brave face because I want to seem capable and want people to see me and not just my illness, but then that brave face seems to undermine that the illness exists at all.
— Amy Harbottle (@treatablyme) January 17, 2019
It’s clear that ME/CFS has the potential to drastically affect a person’s life, impacting their opportunities for stable, fulfilling employment and stopping them from reaching their full potential.
Understandably, ME/CFS can bring about profound feelings of isolation and loneliness among sufferers, who often feel cut off from the networks non-sufferers take for granted; work camaraderie, social events and sports clubs.
The median quality of life for individuals with ME/CFS is reportedly lower than for those with chronic renal failure and cancer. Sufferers are also six times more likely to die by suicide than those without ME/CFS.
Despite the shocking data, the severity of ME/CFS is not currently being reflected in the way government leaders prioritise funding and – frighteningly – many doctors are still unsure of how to diagnose and manage this condition.
ME/CFS receives a very small percentage of research and clinical care funding compared to other chronic illnesses, with research into ME/CFS making up less than one per cent of all active grants given by mainstream funding agencies in the UK.
Although ME/CFS sufferers are ‘measurably more disabled’ than multiple sclerosis (MS) patients, MS receives 20 times the research funding awarded to ME/CFS. This is despite ME/CFS being twice as prevalent in the UK.
UK Coordinator of ME Action, Esperanza Moreno, spoke with UNILAD about the severity of this poor funding:
Increased funding of biomedical research into ME after decades of under-investment is urgently required. The situation is so dire that from 2006 to 2015, only £4 per patient were spent and this decreased to £2 per patient in 2016-17.
The #MillionsMissing campaign is demanding this funding for biomedical research, which must reflect the severity of ME and its prevalence in the UK.
— Steve Hewitt (@SteveHewitt12) May 4, 2019
Since 2017, ME/CFS activists across the world have been pushing for change through the campaign #MillionsMissing, calling for a change in the way government is addressing this urgent issue.
#MillionsMissing protests have taken place in cities across the world, from May 6 – 12, with pairs of shoes left out to represent those too ill to attend.
Many ME/CFS sufferers have sought out online spaces to feel a sense of community, of kinship. Online communities have played a crucial role in tackling lonely feelings, allowing sufferers to maintain a sense of identity, even when their symptoms can prove overwhelming.
Many patients who have been unable to physically attend protests have therefore participated in online activism, sharing their support for the cause using the hashtag #MillionsMissing.
Really pleased to be able to get to #missingmillions event in City Square. Its vital to raise awareness #MECFS with the public and health professionals. Thanks for asking me to talk about the work we’re doing in Parliament @actionforme pic.twitter.com/WczINTMNdv
— (((Alex Sobel MP))) (@alexsobel) May 11, 2019
In the UK, ##MillionsMissing campaigners want the government to increase funding of biomedical research and clinical care as a matter of urgency, as well as to enforce updated training for healthcare professionals.
Campaigners are also calling to end the use of ‘ineffective and potentially harmful’ CBT and GET treatments for ME/CFS. Such treatments are believed to be further perpetuating the idea that ME/CFS is a psychological condition.
There is also a focus on supporting the parents of children with ME/CFS, who are often left vulnerable to unjustified child protection procedures due to a widespread lack of awareness.
Workday me v’s weekend me.
I’m so grateful that most of the time I can work, but losing out on family time on a weekend to recover is hard. pic.twitter.com/qZNiQaVHyD
— Rachel Francis (@RachelFrancis) January 17, 2019
There is currently no single test which can diagnose ME, with no cure and no universally effective treatment.
Clearly there is work to be done, but this requires well-funded research and an ability to see beyond inaccurate and damaging perceptions which have persisted for decades.
Find out more about the #MillionsMissing campaign here
You can watch the eye-opening documentary Unrest on Netflix now.
If you have a story you want to tell send it to UNILAD via [email protected]