Alicia Masson
Alicia's RUN Norwich 10k for M.E.
Fundraising for IiME
Story
2 years ago my best friend, Sofija was diagnosed with Myalgic Encephalomyelitis (M.E. also known as Chronic Fatigue Syndrome, C.F.S).
M.E. / C.F.S is a severe neuroimmune condition which deregulates the immune, nervous and energy systems. Symptoms include nerve and muscle pain, cognitive impairment, nausea, digestive problems, migraines, extreme fatigue, cardiac issues, etc... The disease's progression is measured in years.
Symptoms fluctuate significantly day-to-day. On a bad day Sofija is unable to stand for longer than a few minutes without being in pain. On a good day she can talk on the phone, make herself food and send me pictures of her cat :)
The effects of ME are devastating enough to leave 25% of patient’s bed-bound. Even at the mild end of the spectrum, patients lose up to 50% of their functioning.
There is little medical support available via public healthcare systems. Patients can be left to suffer in isolation for decades without treatment. There is currently no cure.
Sofija and I message every day but I rarely see her now. She is just one of the estimated 17-30 million people around the world suffering.
Your money will go to Invest In ME Research who are directly funding a clinical trial to investigate the cause and test treatment on severely ill patients. It is due to start this year. The trial is waiting sign off but should it go ahead, one of the patients involved will be Sofija.
Please join me in supporting this cause.
Further reading about Invest in ME Research:
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. Their 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).