Hi all, it's coming up to that time of year again, May 12 th is international ME awareness Day and for the last 3 years we have joined in Invest in MEs walk to help raise money for research. Still not enough is known about this debilitating illness and my daughter Katie is now in her 6th year living with ME/CFS. For those who don't know Katie's story here it is. During the summer of 2012 when Katie was 11 she suffered with an increasing amount of stomach pain, headaches and fatigue, by the time she started year 7 just after her 12th birthday she was struggling to stay in school for a full day and had to stop her many sporting activities including dancing, which she had done competitively since she was 5. After many trips to the doctor she was referred to a pediatrician at James Cooks Hospital and after tests to rule out anything else she was diagnosed with ME/CFS myalgia Encephalomyelitis/ chronic fatigue syndrome on the 21st December 2012. We were told to take her out of school completely and rest for 6 months then slowly introduce her back into education. During this time she spent all her time either in bed or on the sofa under a blanket. She didn't have the energy to do anything at all and only saw 1 friend once a week for 15 minutes which was a struggle for her. Katie could no longer read her books which she previously loved as it gave her bad headaches and she couldn't concentrate because of brain fog. Along with the chronic fatigue she had constant stomach pain, mouth ulcers, sore throats, insomnia, aching limbs, loss of appetite, itchy skin, poor temperature control and sensory overload. She slowly started school again in the summer 2013 just for a couple of hours 3 days a week but was soon out of education again. At one point she had no education what so ever for 8 months. She lost her friends and the isolated life she had to lead and the normal teenage life she missed out on caused her to then be diagnosed with social anxiety and depression. Reluctantly she agreed to getting a wheelchair so she could get out of the house for a short while. She had to drop a lot of GCSES but manage to sit 4 subjects with only 3 hours a week home tuition and a lot of working on her own at home. Katie achieved good grades and then went to college on a reduced timetable, taking an extra year to gain her A levels. College has been a struggle for her and she has had to take lots of days off to get through it but she is now in her final year and has successfully applied to 5 universities. Her exams in may and June will be difficult for her sit through and she is planning to take a gap year to work on her health before starting the next phase of her education. At only 18 Katie has had to live with immense pain which sometimes has left her unable to move or being sick and has missed out on so much of her childhood. She has improved and we're hoping she will continue to improve but it is likely that without more research and a cure that she will have to manage this illness for the rest of her life.
250, 000 people of all ages in the UK are affected by ME in varying degrees, Katie's was moderate and mild now but for some it is severe and life has all but stopped, please help us to support Invest in ME and hopefully find treatment and a cure.
Thank you for reading Katie's story and if anyone wants to join us on our 10km walk please do.
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).
