“Worse is the fear of getting this nasty coronavirus. I know if I get it I could be in serious trouble, especially with the Asthma, but even with M.E…”
Tag Archives: Living with ME
ME Awareness: “Ted Hughes once said: ‘Poetry needs a reason’. It would appear ME is my reason to write,” by Ffion | 29 May 2020
“Everyone is talking to everyone else and, with so many good people on our side, things will change for us.”
ME Awareness: ‘Dialogues for a neglected illness’ a Wellcome Project by Natalie Boulton and Josh Biggs | 27 May 2020
The project comprises a series of highly recommended films. The latest video is about Severe and Very Severe ME/CFS.
ME Awareness: “What you need,” he said, “is a job harvesting cabbages,” by Ruth Rookledge | 25 May 2020
“For about the next year or so I thought I must just be imagining an illness, that it was my fault, it wasn’t real…”
ME Awareness: “These lost years have been a grieving process; a loss of a past life that seems so far away,” Naomi Gilchrist | 24 May 2020
“I hope that one day I will be able to use my lost years to help others by raising awareness of the plight of those living with M.E.”
ME Awareness: “I would have been a terrific husband and father if not for ME,” by Russell Fleming | 22 May 2020
“Without doubt my biggest regret has been that I have not been able to have my own family.”
ME Awareness: “I have had symptoms of ME since I was a teenager – over 50 years ago,” by Ann Jones | 22 May 2020
“My husband has taken on housework, shopping, cooking and the garden so is effectively my carer.”
ME Awareness: “I was training for the London Marathon, when I felt I’d got a virus that I couldn’t quite shift,” by Tracey Barraclough | 21 May 2020.
“It’s been a long two years coming to terms with M.E. and it’s still a work in progress.”
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.”
“To be a disabled person does not mean that you must solely be a wheelchair user or someone with a physical deformity.”
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.”
“The distance round the allotments is approximately 340 yards, so it should take me 14 days to reach the 2.6-mile goal,” Juan Cortlett.
“I continue to be confined to the house. Sitting or standing up for more than 2 minutes makes me very lightheaded, so I spend 23 hours each day lying down.”