12/05/2026
Today is M.E Awareness Day.
Myalgic Encephalomyelitis is a complex condition that involves the brain, muscles, immune and hormone systems.
The major symptom of M.E is:
Post-Extertional Malaise, which is a delayed exacerbation of symptoms that follows physical and mental activity. The symptoms are often more profound than the actual task taken that causes them. From doing the washing up, showering, watching TV, reading a book and many more, the fatigue and other symptoms bought on heavily outweigh the original activity.
It can also cause brain fog, chronic pain, dizziness, muscle aches, sensitivity to light, sound and touch and temperature dysfunction.
This condition affects over 400,000 people in the UK. 25% of which are severely affected which means they require 24/7 care and can be bed bound due to the condition causing them to not be able to manage even the smallest of daily living tasks.
Research suggests the prevalence of ME/CFS has increased by 62% since the pandemic, yet this disease is still so often misunderstood.
Our new Chair for 26/27 Charlotte has this condition and here’s their story:
In February 2025, I went on sick leave from a job I LOVED due to my health deteriorating. I already had Fibromyalgia and Vestibular Migraine, but my fatigue was getting worse and worse, and I knew within myself it was something more than my Fibromyalgia.
I had been speaking to the GP for a few years prior about my worsening fatigue, but it kept being dismissed as a symptom of my medication and Fibromyalgia. It wasn’t until it worsening that the doctors started to listen to me. I became extremely exhausted, way beyond the normal tiredness and was struggling to manage to do things day to day. I kept cancelling plans and couldn’t even get out of bed some days. It felt like my body was lead and I couldn’t move it.
In March 2025 I was diagnosed with M.E.
People suggested I just needed to exercise and “push through” but my body was not capable of pushing through. Exercise can also be extremely dangerous for people with M.E. I was put on a course to help manage Fibromyalgia which I attend weekly, but the first hour was doing exercise. I ended up not being able to finish the course because the symptoms I got from doing it were incredibly overwhelming and I couldn’t manage anything else.
This condition is really, really misunderstood. When I tell people I’m resting, they think that I am reading, watching TV or just taking it easy. The reality is I’m lying down in bed unable to do anything. I rest because I am physically unable to do anything else. I’ve lost friends from this condition because they just don’t get it.
I am very lucky to have Hinckley Ladies Circle, because I’ve made some real friendships with women who are always lifting me up and are there if I need to talk. They understand if I can’t make things and always check that I am doing ok. I am grateful for our Circle. 🥰
I have to really plan and pace my energy. I am learning to say no to things and to decide what activities I really want to do and what I can say no to so I am able to do the things I really want to. I have to rest before and after any social activity and usually after a day out, I spend a week doing absolutely nothing else because I can’t.
Life with M.E has been difficult and my partner has had to do a lot more for me. But I am slowly accepting my new normal and learning to live with it. M.E is more than just being tired. I have made a decision to stop saying I feel tired, because it minimises the impact the fatigue has. M.E sufferers deserve more care and compassion.
Thank you for taking the time to read! We are hosting a Tea Party for M.E (Blue Sunday) to raise funds for Smile for ME this Sunday 17th May 2026 at 12pm at Earl Shilton Methodist Church Hall if you’d like to come along and raise funds for Smile For ME charity. It’s a £5pp minimum donation and you are encouraged to wear something blue. Please pop the page a message if you’d like to come along.
You can also find out more about M.E via The M.E Association
