Following up on the kind and supportive comments from so many of you, I found the Liver North website and ordered (as recommended by several of you) the PBC DVD and await its arrival. I also read their latest newsletter and read about an article in the British Medical Journal - in the "Patient's Journey". It makes very interesting reading, here is the link in case any of you might also find it useful:
I saw it before and I am glad you posted it again. its a brilliant article. It describes just how i feel a lot of the time. In a strange way, it brightened my mood no end the first time I read it because i started to believe for the first time that i wasn't going mad!
I think the authors should be congratulated for such a good piece of work and the BMJ should be congratulated for making it available. If the docs would just read it now
The author really captured the essence of being fatigued on a daily basis. Thank you for sharing.
I have never been able to explain fully to both family and friends how fatigue restricts my activities. Several of my friend have now stopped inviting me to social activities as I often had to cry off at the last minute. Those I have left I am going to show them the article as it explains things so much better than I can. Thank you for sharing.
Brilliant article - thank you so much for sharing, I've saved it to show people as it explains exactly what I go through on a daily basis ...... I've also ordered the DVD from Liver North, looking forward to it arriving.
Thanks again
Thank you Sheep Jane, for posting the link for that article. It well explains the fatigue we deal with!
Magnolia
Thank you SheepJane for sharing this link
I recognised so much of myself in Tilly's explanation of her fatigue and of the reaction of those around her. Thank goodness my fatigue experiences are not that severe. The tiredness comes over me in waves its like being removed from the electricity supply, my energy just runs out. Its so frustrating because sometimes its not even from over exerting myself but when I get these feelings I just have to lie down and sleep.
I think I'll take a copy of this article with me next time I visit my GP or Gastro Consultant because when I have mentioned how tired I get neither seemed to take any notice, the GP completely ignored the point and the consultant said tiredness (fatigue) was nothing to do with the PBC.
my dvd arrived this morning 
that was quick as I only ordered it on Friday !!
looking forward to watching it - thanks again SheepJane for sharing the link
Sue xx
wow read this and nearly cried - it's so how I feel - thank you for the link x keep well x
Update on Me, Cancer, and PBC
Interesting new article on gut bacteria link to PBC and PSC, suggests antibiotics as possible new treatment
***Revision at conclusion***ALT, AST, Alk-phos and their possible insignificance in monitoring PBC progression? 
Changes and advances in pbc diagnosis -praise be. Hallelujah!!
PBC: Eye problems and scarring on skin?
