PBC Foundation
6,737 members5,807 posts

What PBC does to your brain - new research


I don't post very often, but do think everyone should read this.

It should be particularly helpful to people whose lives are blighted by fatigue. We know that people with bad fatigue or "brain fog" or clumsiness who are in early stage PBC, or who have raised AMA but "normal liver function tests" are usually told it is nothing to do with PBC.

I am thinking of starting a Facebook page that will focus on research that is really important to us, to make sure people hear about it. Meanwhile,please do read this, here is the link: ncbi.nlm.nih.gov/pubmed/287... and here below is a precis of the findings:



Fatigue, itch, depressed mood, and cognitive impairment significantly impact the quality of life of many patients with primary biliary cholangitis (PBC). Previous neuroimaging studies of non-hepatic diseases suggest that these symptoms are often associated with dysfunction of deep gray matter brain regions. We used resting-state functional magnetic resonance imaging (rsfMRI) to determine whether PBC patients exhibit altered functional connections of deep gray matter.


Twenty female non-cirrhotic PBC patients and 21 age/gender-matched controls underwent rsfMRI. Resting-state functional connectivity (rsFC) of deep gray matter brain structures (putamen, thalamus, amygdala, hippocampus) was compared between groups. Fatigue, itch, mood, cognitive performance, and clinical response to ursodeoxycholic acid (UDCA) were assessed, and their association with rsFC was determined.


Relative to controls, PBC patients exhibited significantly increased rsFC between the putamen, thalamus, amygdala, and hippocampus, as well as with frontal and parietal regions. Reduced rsFC of the putamen and hippocampus with motor and sensory regions of the brain were also observed. Fatigue, itch, complete response to UDCA, and verbal working memory performance were also associated with altered rsFC of deep gray matter. These rsFC changes were independent of biochemical disease severity.


PBC patients have objective evidence of altered rsFC of the brain's deep gray matter that is in part linked to fatigue severity, itch, response to UDCA therapy, and cognitive performance. These results may guide future approaches to define how PBC leads to altered brain connectivity and provide insight into novel targets for treating PBC-associated brain dysfunction and behavioral symptoms.

There is a link to the full report on Pubmed, I am printing it out for my GP!

11 Replies

I guess the brain fog and depression. Could be due to the fatigue and symptoms



Thank you for giving the correct link, DrewH. I have re-posted for clarity.


To be honest didn't really understand the article but did notice it dated 1986. May be a bit out dated


I think the link posted and dated 1986 was the wrong one, have a look at the link posed by drewh.


I can't understand why people are told it's nothing to do with PBC when the EASL guidelines discuss it all so clearly. (European Association for Study of the Liver). These clinical practice guidelines need to get into every clinicians inbox. I used the patient version issued via Bearfacts, PBC Foundation yesterday at my specialist appointment, it was invaluable.


Hi I don't actually have the doc you are referring to, but over the years I have given various docs to a range of medics - GPs, consultants, which explain that you can have bouts of severe fatigue, clumsiness, etc etc, regardless of disease stage. They take no notice. I am a patient at a certain supposedly world-renowned south London hospital, where all the consultants take the attitude that PBC is completely without effects in most people. If you try to discuss your symptoms and the effect this is having on your life, before the point your liver is actually collapsing, they just dismiss you outright. I suspect the underlying problem is that they have little or no respect for women, and PBC is not treated seriously because most of the people seeking help are middle aged and female.


I would by private not public means advise the PBC foundation the details of this hospital these people need intervention, my liver is doing great my bloods are good, but unfortunately I am extremely symptomatic, thankfully my GP & hospital follow these guidelines I have the correct support & medics that don't understand need intervention. X


Hi channelview and drew. Thanks for the link and info. I can't disagree with the findings and I suspect it confirms what many PBCers experience. Would have thought they could get a much bigger study though - there's lots of us! I know for my part given my age (a young 57!) and menopause I put my mental lethargy down to that rather than PBC originally. Nice to have it confirmed where 'blame' lies. I try to keep my brain active and continue learning (struggling along with Japanese language currently) to ensure I stay as mentally healthy as possible. If anyone has any other tricks it would be great to hear. Thanks for the scientific info.

1 like

Hi, I only just read this, so over three hours since you re-posted channelview. Is there any way of changing the original post? Maybe contact the 'PBC F, or Robert, directly?? 'Only it's obvious some people are just reading the first link, and not necessarily checking the comments.

I've noticed this before, a lot of posters respond only to the initial post and don't read the subsequent comments, so the exact same advice gets repeated over and over, but also mistakes can get repeated. But thanks so much for posting.

NB I have not read the original article yet, will do asap, but I will be very interested to see what it has to say about people with only high AMAs, as that is my situation.

Many thanks, take care,



I'm over a yr diagnosed all is still well I hope everyone is OK..this site has brought me tons of info I otherwise wouldn't know about thank u to everyone for yhat

1 like

You may also like...