CFS Patient Advocate: My daughter, Alexis, is seriously ill with Myalgic Encephalomyelitis (better known as ME). She has been housebound in St. Paul, MN for five years. Because of her deteriorating condition, I have had to move full time from my home in Philadelphia to help her. Our biggest problem is that she has no attending physician. She is unable to travel to an office and we have found no one willing to manage her care at home.
I, a sculptor, make medical decisions for my daughter, based on telephone consultations with a web of physicians throughout the U.S, Canada and Europe.
One of the fundamental difficulties in dealing with this illness is this lack of ongoing medical care. Doctors for the most part do not believe the illness is physical or infectious, and in large part are unable or refuse to treat it. Another giant hurdle is the lack of coherent data. The WPI is dedicated to addressing these problems.
Patients with neuro-immune diseases are taken out of the game of life, and there is so little help. They, and their advocates and caretakers alike, are isolated from friends and family, and cut off from the usual avenues for medical care.
Lives of patients and families are constrained, limited and indeed shattered by these experiences. An ME sufferer once said to me: "This is not the worst disease but it is among the cruelest."