Megan is a Ward Clerk at Cygnet Brunel and a member of Cygnet’s Disability Network.
What is Myalgic Encephalomyelitis?
Myalgic Encephalomyelitis, often referred to as ME or Chronic Fatigue Syndrome (CFS), is a serious, long‑term neurological condition that affects multiple systems in the body.
It is recognised as a physical illness, not a mental health condition, and it can be long‑lasting or lifelong.
Under the Equality Act 2010, I am classed as having a long‑term, fluctuating neurological disability.
ME is often described as a hidden disability due to its invisible nature, but this does not reduce how debilitating the condition can be.
Symptoms of ME/CFS
There are four core symptoms required for a diagnosis of ME/CFS:
- Post‑exertional malaise (PEM)
- Unrefreshing sleep or significant sleep disturbances
- Debilitating, persistent fatigue
- Cognitive difficulties, often referred to as brain fog
Other common symptoms of ME include:
- Flu‑like symptoms
- Chronic pain
- Digestive problems
- Food intolerances
- Increased sensitivity to light, sound or temperature
Understanding these symptoms is vital, but awareness of the complexity and variability of ME is just as important. For some people, symptoms fluctuate. For others, they are a constant presence. Some individuals do recover, while others will live with ME for the rest of their lives.
What causes ME/CFS and how is it treated?
Research into ME/CFS is ongoing, and while there is still much to learn, evidence suggests multiple contributing factors, particularly involving the immune and neurological systems. There is also growing recognition that ME may present in different sub‑types.
At present, there is no known cure for ME/CFS. Treatment focuses on managing symptoms, preventing deterioration, and reducing the impact on daily life.
The physical limitations of ME, combined with uncertainty and lack of understanding, can also have a profound impact on mental health, increasing the risk of anxiety, depression and emotional distress.
Common Myths and Misunderstandings
One of the biggest challenges of living with ME/CFS is misunderstanding. When I tell people I have Chronic Fatigue Syndrome, I have often heard responses like “everyone is tired.” This minimises a condition that goes far beyond everyday fatigue.
Some people have even suggested that I am exaggerating or being lazy. I know this is just a lack of understanding on their part, and that a lack of awareness is a major contributing factor.
My Personal Experience Living With ME/CFS
I have always dealt with an overwhelming feeling of tiredness since I hit puberty. I was often sent off to see specialists to determine what was ‘wrong’ with me, but it would always result in a referral to CAHMS or being diagnosed with low iron.
It became almost normal for me to experience low mood and reduced energy. I became used to it and feared talking to the doctor, as they would automatically tell me to lose weight or that it was normal for girls to be more tired due to their menstrual cycles.
When I turned 23, it got much worse. I couldn’t function. It felt like my body was actively working against me, and I suffered a massive decline in my mental health. I put on weight due to not being able to be physically active and overwhelming daily pain.
There were days that I wished that I wasn’t around anymore and felt so alone. I increased my antidepressant dosage with the hope that it would help, but it only made me feel more alien in my own body.
This was when I was introduced to ME (Myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) by my doctor.
I was then referred to the Bristol ME service for assessment; I waited six months for my appointment, which lasted all of one hour. After over ten years of poor physical and mental health and a continuous battle with GP/specialist services, it only took the assessor 30 minutes to officially diagnose me with CFS.
I couldn’t believe it at first, but then I received the official diagnosis letter. Part of me was relieved to finally have answers, but another was angry for the young girl who had been repeatedly ‘fobbed off’ and told that it was ‘all in her head’. A part of me broke when I knew this wasn’t going to go away. That one day I may feel ‘fine’, but the next I may not be able to lift my head off my pillow.
What Helps Me Manage ME/CFS
The hardest part for me was coming to terms with my diagnosis and how much I have to adjust to suit my new ‘normal’.
Over the last four years, this has been a continuous and difficult adjustment for me. There have been times when my mental health has been so poor that I have been afraid to continue, and the darkest thoughts would appear, going through episodes of manic depression and anxiety.
What has helped most is surrounding myself with support — people who understand my limitations and don’t judge my fluctuating energy levels. I am still learning what works for me, but having understanding and patience around me has been crucial.
Distractions through gentle, manageable activities can sometimes help, but managing ME is a constant learning process due to how unpredictable the condition can be.
World ME Day: Why Awareness Matters
My health conditions do not define me. They may limit my everyday functioning, but they will not dictate the rest of my life.
Advocating for myself and my rights as a disabled person has enabled me to challenge misconceptions and push for greater awareness. Speaking openly about ME is something I choose to do not just for myself, but for others who may still be struggling to be believed.
For World ME Day, I ask that you take just five minutes to learn about ME/CFS. Greater awareness leads to compassion, improved support, and earlier understanding for those living with this often invisible disability.
By listening, learning and sharing accurate information, we can help make invisible conditions visible, and make lives a little easier.