Robert C. W.: …the debilitating weakness, the relentless fatigue, and the cognitive problems… it is easy to see how my life has been reduced to but a mere fragment of what it once was. I am now a man that has to face his family everyday, unable for the most part, to provide them with anything but inconvenience; a very degrading situation to say the least.

Julie: …you just never know how you are going to feel from one day to the next. I have had to re-think the way I do things. … I must plan out what I can do and make all my tasks into smaller jobs and what used to take me a day now takes a week or more if I am lucky.

Tracy N.: My life has been affected… in every way possible, and even ways people would not think about. When a person is ill with the flu or even something like cancer, people are willing to rally by your side, bring you food, help you clean… etc. and give you the support you need. But with an illness so misunderstood… we suffer, year after year… and must often suffer from cruel remarks… "If you would just get out more..." or " you don't look sick...". "...just stop looking for all the little aches and pains and get on with your life...." said not just by doctors, but from our own families and friends. Of course we don't "look sick" when people see us, certainly it is going to be on one of our "good days" should we venture out. … If we looked as sick as we are, people would run the other way in terror.

Howard B.: I've lost my ability to walk outdoors, something I used to enjoy enormously. I've also lost the ability to work sitting up. For five years, I was too weak to speak... I live most of each day in isolation…

Betty G.: No more do we take for granted what we had before. I have no desire to leave home due to all the smells in the environment: cigarette smoke… perfume, cologne… cleaning products… etc.

Kathleen R.: …I have learned to take life easier, and enjoy the journey, as I don't know where the destination will be. My future is so uncertain, that I am learning to live in the here and now.

Cheryl M.: I hear that there is a doctor in England who has had a high success rate in treating patients with CFIDS, and that perhaps there is a doctor or two in the Eastern US who is at least compassionate towards his patients. … Must we give up our jobs and move to another country to receive effective, compassionate medical treatment for our child? Are we bad parents if we don't, or are we enablers in a codependency if we do?

We will trudge on in our quest for treatment, because our daughter has not given up on her dreams and we have not given up on her. This is all just much harder than it should be in a day when I can open up a magazine and look at color pictures of the surface of Mars.

Cynthia A. M.: I was a person who kept involved and kept my word now my word is no good because no one can depend on me. I was so active and loved life. Now to survive is a big job. ... I dream of someday getting back into the real world. It has taken so much from me but it will not take my strong will to fight for a cure and to believe there is hope for us. … We are real people suffering.

Grace W.: I woke up around 12 in the afternoon after 16 hours of sleep. I just barely got out of my bedroom when my husband commented that the dog needed to go to the vet and that the grocery list needed to be finished. I just got up, was in awful pain, stiff, nauseous, dizzy, and was soaked from the horrible nightsweats that come with these illnesses.