We provide support, reliable information, a voice when needed, and funding for medical research.
Monthly Archives: May 2020
ME Awareness: The Lost Years: Missionary forced to give up vocation to do battle with ME | 18 May 2020
“I guess my Christian faith sustains me even though a lot of the time I feel like I’m just holding on with my fingertips.”
ME Awareness Press Release: Mum of tragic teen with devastating illness speaks out about years lost in lockdown | 18 May 2020
“My daughter is so ill she has had to disengage with her education. She has been house-bound for three years and bed-bound for the majority of this time.”
ME Awareness: Failure to accurately diagnose can lead to lifetime of misery and suffering by Debbie Mckno | 17 May 2020
“I’m struggling to come to terms with the fact I was not diagnosed for so long, and am angry that I suffered needlessly for 24 years.”
ME Awareness: “While in many ways it was a relief to finally have a diagnosis, both I and my husband were devastated,” by Carolyn White | 17 May 2020
“I didn’t complete my degree but received sufficient qualifications to be ordained in September 2007.”
ME Awareness: “I suffered without help for so long, we went to every doctor and agency without answers,” by Ellyn Gould | 16 May 2020
“M.E. still affects every aspect of my life. Attending school was a huge hurdle for me and one I still struggle with.”
ME Awareness: “If only I could experience consistent nights of restorative sleep, my life in general might be better,” by Russell Fleming | 16 May 2020
“The most frustrating aspect of sleep is the frequent inability to enter deep sleep. It feels like I only ever dream, and it is exhausting.”
“What I am suggesting is that, however people refer to M.E., however people experience it, chronic fatigue is not the same thing.”
ME Awareness: “ME is a cruel illness and whether we have it mild or severe, we all still suffer,” by Naomi Gilchrist | 15 May 2020
“I’ve tried so many different methods to manage my symptoms. Medication helps to a degree alongside self-management techniques.”
“To be a disabled person does not mean that you must solely be a wheelchair user or someone with a physical deformity.”
“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.”
ME Awareness: Let us contact your GP or other healthcare professional and keep them informed about ME | 13 May 2020
We want to increase the flow of information to GPs and other healthcare professionals about M.E.
ME Awareness: John Milburn the solo Half-Marathon Runner and Pat Brown who sold her 1960s bike | 13 May 2020
Two stories from very generous supporters of the ME Association.
ME Awareness: “GP’s have not been given any training to recognise a patient with ME,” by Smita Dutta | 13 May 2020
“The GP’s I have seen treat everyone based on symptoms rather than the whole illness itself…”
ME Awareness: BBC News: Eastbourne mum with ME gets some life back after years lost in lockdown | 13 May 2020
Emma spent a decade in isolation at home after becoming severely ill with ME in 2004. She has been interviewed by the BBC together with Dr Shepherd.
ME Awareness: “When my youngest was 11, he asked me if I was going to die. I was horrified,” by Theresa Baynham | 13 May 2020
“I’ve got steadily worse, less and less able to work, missing out on all social outings, not able to take holidays due mainly to lack of finances…”
“Since the coronavirus started to spread I have cancelled all my support because I wanted to be completely isolated.”
We invest in biomedical research but need your support so that we can do more to determine the cause(s) of M.E. and help develop effective treatments.
The online course can be taken by anyone with a professional interest in ME/CFS and will hopefully increase awareness and understanding.
ME Association Research: New study to measure physiological changes in daily activity in people with ME | 12 May 2020
This exciting study will examine the physiology of M.E. and is led by researchers from Leicester, Oxford and Manchester Universities and Physios 4 M.E.