It is ME Awareness Week in May and we’ll be focusing on health and social care against the background of the new NICE clinical guideline for ME/CFS.
We asked those who suffer with Severe M.E if they would like to submit their stories to be published on the ME Association website blog.
“My husband has taken on housework, shopping, cooking and the garden so is effectively my carer.”
“I’ve tried so many different methods to manage my symptoms. Medication helps to a degree alongside self-management techniques.”
“Managing energy is the most difficult but important factor. My advice would be to try to establish a routine to get the best balance between sleep, activity and rest.”
We want to increase the flow of information to GPs and other healthcare professionals about M.E.
“Since the coronavirus started to spread I have cancelled all my support because I wanted to be completely isolated.”
“The first big challenge was when I became wheelchair-bound 3 years ago. The next loss was when I could no longer read or watch a film.”
“I suspect that the losses faced by many people with M.E. are in some ways uniquely different to almost every other patient group.”
ME Carers Connected can help put carers in touch with one another for mutual support and to share experiences.
Sharing your story is one of the best ways we have of improving understanding and awareness of M.E.
The nursing home was accommodating at first. However, they didn’t have any experience caring for M.E patients and I don’t think they fully realised the extent of the situation.
The impact of these last three decades of attempts to bury the serious disease M.E. under a sea of unrelated and vague “fatigue conditions” has been catastrophic for patients.