Chronic Fatigue Syndrome (CFS/ME) is often brushed off as tiredness or attention-seeking, if it’s recognised at all. After all, everyone gets worn-out. In reality people have died from CFS, and at its worst those with CFS cannot physically get out of bed. So why is it not taken seriously? Continuing our focus on Disability History Month, The Gryphon looks into Chronic Fatigue Syndrome, the ways it affects sufferers and how it is often misunderstood.
CFS causes debilitating exhaustion (which cannot be alleviated by rest), disturbances in sleeping patterns, extreme pain in the joints, palpitations, poor concentration and memory, dizziness, sensitivity to light and sound, brain fog, insomnia, collapsing due to exhaustion, enuresis (loss of bladder control) and more. Around 250,000 people in the UK suffer from it and, ultimately, there is no cure. It is currently only treated with therapy and medication to relieve the symptoms, although exercise therapy has recently been encouraged.
Because the cause of the condition is contested some doctors have been cautious to acknowledge it, and medical professionals usually do not know much about it unless they have specialised in it. After all, why should the NHS spend vital time and money on something they cannot understand, over a visible and treatable illness? In fact it was only since February 2017, after a study done by Griffith University, which found that those with CFS have ineffective immune systems, that CFS has began to be accepted more widely within the medical profession. CFS has been dismissed as ‘female hysteria’, and is rarely talked about in the media among the already taboo subject of disability.
A friend of mine, Bethany, was diagnosed with CFS aged 13 after seven months of her GP not knowing what the issue was. Bedridden and unable to attend school, she missed out on many teenage experiences, and was subsequently diagnosed with anxiety and depression. She uses a wheelchair, unable to walk for more than five minutes at a time. As a friend, it is difficult to find ways to include those with CFS in activities. I chatted with her mum, Sarah, to find out what impact CFS has on their lives and how to help friends with CFS.
What were the first signs that there was something wrong, and how long did it take to get a diagnosis?
The first signs there was something significantly wrong was when, one morning, Bethany could not get out of bed. I had woken her ready for school but her body was so heavy that she was unable to lift her head off the pillow, her joints were swollen and her speech slurred. Prior to this she had months of generally feeling unwell with no obvious symptoms other than feeling extremely tired, headaches, sensitivity to light and several bouts of tonsillitis and sinusitis. We were back and forth to the doctors and dismissed many times with very little help and advice. After several months they began to run blood tests, then after nearly a year we were referred to the hospital where Bethany was eventually diagnosed with Chronic Fatigue and was then referred to University College London Hospital (UCLH).
What’s been the hardest part about dealing with your daughter having CFS?
The hardest part is watching the young lady who was once so energetic and the life and soul of all social gatherings withdraw into herself. She has been unable to attend school for nearly three years, two of which she has had no education at all. She has lost all her school friends and she is unable to continue with her dancing which she used to do every day, as well as her theatre school classes. It’s heart-breaking to watch the sociable, lively, friendly, happy girl disappear into a wall of depression and social anxiety because of her illness.
How do you feel the doctors and medical profession treat CFS and its patients?
There are many members of the medical profession who still do not understand chronic fatigue. There was one time an elderly consultant told Bethany, whilst she was lying on a hospital bed with her top off and having an ECHO, to do more exercise because the amount she was doing wasn’t enough for a girl her age! Equally, though, we have experienced fantastic treatment and help from the staff at UCLH who have made complex conditions such as Chronic Fatigue in adolescents fundamental aspects of their research. They are unbelievably helpful, caring and medically understanding.
“…CFS has been dismissed as ‘female hysteria’, and is rarely talked about in the media among the already taboo subject of disability…”
How does CFS affect Bethany’s daily life and yours as a parent?
CFS has affected every aspect of both mine and Bethany’s lives. Bethany struggles with everyday tasks – even showering, dressing and using the bathroom. It has affected her schooling, friendships and social life. It has affected mine by having to give up work to become a full time carer to assist her in daily tasks, take her to hospital appointments and generally become her counsellor, friend, carer and mum all in one. It has also affected the rest of the family as we have to consider how and where we can go that is wheelchair friendly.
What is the best way to help a friend or relative with CFS?
The best way to help a friend with CFS is just to be there for them. Understand there will be days where they will not cope or manage to do anything. Be prepared to sit with them, or go out if they are able. The actual person has not changed, the illness has robbed them of the things they were once able to do. Be patient – sometimes brain fog makes it difficult for them to recall words and speech can become laboured. The collapses can be incredibly scary. Sit with them and talk to them until they come round – they can still hear you, they just cannot move or speak. Understand that the illness has affected every aspect of their life and so depression and anxiety are inevitable and therefore they need love, support and encouragement.
CFS is a largely ignored condition that has not had enough time or effort dedicated to understanding and treating it. Despite the recent scientific progress in understanding its biological causes, the journey of its acceptance in society is far from over, along with countless other disabilities and chronic conditions that impact people’s everyday lives.
[Image: Functional Medical Corporation]