I have lived with ME for almost 5 years now and have not been able to work for over 3 years. This illness, although I am only moderately affected is so debilitating, simple things like doing the grocery shopping, socialising with friends or just even keeping on top of housework have to be planned and fitted into my schedule of very limited activity, which at the moment is about 4 hours a day. This 4 hours includes everything even things able bodied people take for granted like taking a shower or just talking on the phone.
Those severely affected are bed bound for years on end as there are no effective treatments, too little is known about this awful illness and we need more research done if we are ever to work out how this illness strikes, and more importantly find a cure!
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).