having a lot of relief from my cfs symptoms

[sianrecovery]

Hi Tristen
I think there may be a small study underway in the UK on ME and Hep C, but dont quote me - I will try and find out more. Given Hep C is such a persistent virus, and has a strong ability to both change its form and to persist, I guess I'd expect to see the same type of co-morbidity with Hep C that you do with Lyme pathogens. This is a vast subject, and if I were an immunologist, I would be drawn to it because of all the interesting questions it raises about immunity and virology. Certainly when one of my friends went to a recent Hep conference, attending from a patient advocate point of view, she heard speakers say there was an emerging correlation between interferon treatment and CFS.
For myself, I'd had Hep C for probably 20 years prior to treatment, and other co-morbid genetic conditions, and I was really very ill before I took it. I was better for at least five years afterwards, but in retrospect, I was in an insidious onset situation for the ME. I then got an intestinal parasite, had Hep B vaccinations for work, had a very stressful bit as a carer, and the balance tipped into full time, full on ME. So it was multicausal, and the interferon both helped and harmed.
If that makes sense. It's not easy to simplify such a complex set of relationships between actions and outcomes.

 

[Tristen]

Hey Sian,

Yea, completely makes sense and most of your experience is the same as mine. You make another good point on the complexity of such a stealthy shape shifting virus suggesting it's likely to have significant ability to disrupt our immune systems. I think the impact of extra hepatic effects of hcv are as much if not more destructive than hepatic decline. We are just seeing the tip of that iceberg emerging.

I believe Ifn can trigger me/cfs, but I do question researchers claiming increased incidence of CFS post Ifn Tx because most of them don't understand the disease. Maybe I'm wrong....not important anyhow.

Thanks for looking into the study over there for me and anything else you care to share.

Best,

Tristen

 

[otterwatcher]

There does seem to be a subset of treated patients who clear the Hep C but go on to develop ME or autoimmune disease. I'm one, and I have another two friends in the same boat - one of whom got hashimoto's, sojorgens and other stuff and was told by the consultant 'we dont know what to do with people like you' - ie, ones who'd done interferon and then got other stuff. Having said that, I dont want to put anyone off interferon - I also know plenty of people who have done it and are fine. It was a big turnaround for me too, and I have no proof it contributed to my later development of ME. Even if it did, I would still pick that over end-stage liver disease, a process I have watched in several people. I think having Hep C itself is a risk for ME, for all sorts of reasons - impaired detoxification, immune exhaustion etc etc.

I also developed ME/Cfs post successful interferon treatment for chronic hcv in 2006/7. I am now helping another friend who is 22months post treatment and in the same boat.The research into interferon and CFS is being done by Carmine Pariante at Kings College hospital.I too know folk who have treated and feel good and those who didn't and are no longer with us.