Hi Mar2a,
Although my symptoms are different than ours I wanted to reach out. My illness was caused by an test interferon, ribaviron, bocevivir experimental HepC treatment I underwent in 2007. It was a terribly toxic treatment and I finally dropped out of the study after 11 months. I was clear of the virus in 60 days and remain clear. However, I have been severely symptomatic (see above message) since June of 2014.

It is my understanding that "post interferon syndrome" is in the basket of disorders often designated as ME/CFS and fibromyalgia. I have treated my disease accordingly with mixed results. I suffer severe relapses after exceeding my limited exertional capacity. Because of the progressive nature of the illness and my increasingly weakening state, my relapses now last as long a 5-6 weeks. PEM or "Post Exertional Malaise" is the overriding, unifying diagnostic that all ME´s share. It sounds as though you too suffer from this. It is unfortunate that even some higher authorities in the medical profession still recommend exercise to treat our disease - the one thing that conclusively makes us sicker!

You have probably realized that there are very few doctors that have any understanding of disorders like ours. We have to be our own advocates which requires effort that few of us have the capacity for. Nevertheless, we carry on... combing the internet for new information, experimenting with supplements to support our compromised systems, trying out different pharmaceuticals to aid sleeping and mitigate our discomfort.

I support your efforts to better understand and treat your disease and am happy to share my experience if it can be at all helpful.

C.K

PS If you haven´t already discovered healthrising.org please take a look. Founder, Cort Johnson, does an amazing job keeping us current with developments in the ME Fibro world.