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).
My son has had M.E for nearly 6 years. M.E is a serious disabling condition. Hugely misunderstood. It effects all body systems: autonomic, immune, nervous, digestive, musculoskeletal etc Appearance rarely reflects quality of life. Latest research shows that quality of life scores on all indicators are significantly lower than for multiple sclerosis. Many are housebound or even bed bound.
M.E is not about fatigue.....it is about your whole body not having the functioning capacity to cope with the normal range of human activity. If you stay within your tight limits you may not necessarily seem 'ill'; if you overexert your limits (even by a seemingly small amount) you get PEM (post exertion malaise) where you can become very unwell (e.g. exhaustion, very cold, unable to communicate, sensitive to light/sound, not able to focus or concentrate on anything). PEM can last from hours to days. Continued high levels can trigger a relapse. You have to monitor and pace your activities every single day in order to have small windows of time where you can function effectively.
A recent study of young people showed that improvement happens over years not months. By 5 years 60% reported recovery & by 12 years 88%. Of those who reported 'recovery' a 1/3 admitted to modifying their activities to remain feeling well. M.E impacts a young person's entire life. Many do not have the functioning capacity to be able to attend school; they become very isolated. Some become so cognitively impaired they cannot study at all; some for 45 mins a day tops. They have to give up all their beloved physical interests. I am cycling for M.E; my son has not cycled since he was 9 years old.
Many medical schools do not even have M.E as part of their training.
Please watch Unrest by Jennifer Brea available on Netfliks.