Caring for someone with Very Severe M.E is both an honour, a privilege and a responsibility so difficult it is similar to walking through a field of landmines, not knowing if the next step you take no matter how important and necessary is going to have devastating consequences. My name is Clare and I was […]
The 8th August is Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis, also known as Severe ME Day. It is held on the birthdate of Sophia Mirza, who was the first person in the UK to have their cause of death registered as Very Severe ME. Unfortunately, she is not the only one who’s died […]
It all started for me in 1992, when I was 29. I got pneumonia and pleurisy, was in bed for a month and there began my nightmare. I developed skin rashes and inflammation in my ribs, spreading all over. I was diagnosed with Lupus. A year later I was suffering attacks of muscle pain, fevers […]
Katie Meehan, Social Media Manager In the run-up to Severe M.E. Week (3rd August), we’re looking for people with Severe M.E. who would like to tell their stories. We want to talk about the key issues that affect arguably the most neglected section of our community, and plan on raising awareness throughout the week commencing Monday, […]
I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years.
Navigating the benefits system can be very challenging with M.E. We hope that this resource will improve your chance of a successful outcome.
They don’t see the days spent in tears from being in so much pain and the frustration of not being able to spend time with them.
“Most days she is in bed, but we try to make life as normal as it can be for her. We have to stay strong for her.”
Cognitive symptoms are common for everyone who has M.E., but it is the cognitive fatigue which disables me the most.
Zoe was put under surveillance – monitors, lights on constantly, nurses watching her eat and humiliatingly insisting on escorting her to the loo…
This year marks 10 years of M.E for me. With 6 1/2 of those being severe, I wanted to write a little something that might help others cope.
This month we’re asking about your level of illness severity and for a discussion around definitions.
It is Severe ME Day on Thursday, but we think people severely affected deserve to have a full week dedicated to raising awareness.