My Daughter
In 2001 she was approved for disability, after having spent many years (off and on) in the hospital, mostly due to dehydration due to diarrhea and fever. She has IBD, IC, alcohol intolerance, flu-symptoms, daily fever which spikes to 102 or so in the afternoon, PEM, sore throats (with white spots that are not strep and have previously been unable to be identified), severe abdominal pain, enlarged lymphnodes, and insomnia. Although fatigues, she has not had severe weakness or been bed-ridden. These symptoms have been pretty constant since about 1997.
She had a period of illness (coughing up blood, severe migraines, and severe abdominal pain with a low grade fever) from age 11-13, then she was fine for about 5-6 years. When she was a sophomore in college she had a severe kidney infection caused by a Group B strep. It was about 6 weeks later that all hell broke loose...immediate onset of all the symptoms in my first paragraph, from which she has not recovered.
She did manage to get through college, but it took 10 years...pacing.
I have given her information on XMRV, and she is going to speak with her PCP about it. Her current PCP has always believed my daughter had an infectious disease, so we had that one thing going for us.