We are walking 5 miles from Weston-super-mare to Brean in the ME awareness week 6th -12th May.
This is a charity close to my heart, as my son has been struggling with this illness for the past 8 years. He has been bed and sofa bound since May 2018 when he crashed. He is unable to shower or get dressed. He just lays there all day with the door shut, resting, recovering.
My sons name is Thomas
He is 19 years old and has been ill since he was 11 years old.
He had tonsillitis, which led to Glandular Fever and he has never recovered. He was diagnosed within 6 months with Chronic Fatigue Syndrome. Then there was not much help, there still isn’t. He has been discharged from Bath hospital, as he is too ill to attend, but they only teach you how to live with ME and he is unable to make the 1 hour skype appointment. They really don’t understand.
There was a lot of stress and pressure to go to school, which was not possible, which is to do with the schools attendence figures.
Facebook help groups for parents with children with CFS/ME has helped us considerably. They are such a wealth of information and have more understand and experience of the illness than the medical people. When I joined one group, it had 100 members now it has 1,160 members ! Thats a lot of missing children just in that one group.
He used to be a very happy active boy, loved riding his bike, scootering round the garden really quickly. He loved science and experimenting. Taking everything apart to see how it works.
He has missed out on a lot of school life, going to college and university. He can’t socialise as is not able to have a conversation and unable to go out with friends (he doesn’t have any, as they have all moved on)
He can’t take part in a family Christmas day or a birthday celebration as the noise and people moving around is too tiring. Last year he couldn’t open cards, read them or open presents.
He misses going out for meal. Riding his bike, driving a car. He would love to have a car and be able to take it apart and rebuild it, hopefully one day !
He cannot tolerate noise, that wears him out so quickly, he looks dreadful and his speech is slurred. He wears ear plugs. That is hard in a family of five people, one of 5 years old.
Bright light, strong smells, cleaning products, highly scented flowers, give him headaches, as it is over stimulating.
Brain fog / memory problems
He needs to eat regularly, every two to three hours, at set times otherwise his energy levels drop and it takes him along time to recover.
Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS).The charity is run by volunteers - patients or parents of children with ME - with no paid staff.Overheads are kept to a minimum and all funds raised to go to promoting education of, and funding for biomedical research into, ME.Our efforts are focused on setting up a UK Centre of Excellence for ME which will provide proper examinations, diagnosis and in time treatment(s)/cure(s).