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A myPBCteam Member asked a question 💭
Los Angeles, CA

Since we know fatigue is the main component/symptom when it comes to quality of life. Are there any clinical studies going on for PBC’s? I see ME, long COVID, and POTS individually listed only.

1 day ago
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A myPBCteam Member

And Second-Line Pharmacological Evaluations (IQIRVO / Elafibranor): Ongoing. While the core Phase III ELATIVE trial established the drug's safety profile, tracking its real-world impact is very much active. Major updates and new long-term extensions monitoring real-world fatigue and quality-of-life improvements continue to be heavily presented at global medical congresses like EASL

1 day ago
A myPBCteam Member

Yes on Friday, October 30, 2026, Stockholm-based biotech company Umecrine Cognition released topline results from the second part of its Phase 1b/2a clinical trial (UCAB-CT-05) evaluating its drug candidate, golexanolone, for primary biliary cholangitis (PBC) related fatigue and cognitive symptoms.

Key Outcomes of the Trial

• Efficacy Miss: Golexanolone did not demonstrate a statistically significant improvement over the placebo in its primary, prespecified cognitive endpoint (measured via the PBC-40 cognition score). Additionally, it showed no treatment benefit in the supportive analysis tracking PBC-related fatigue.
• Safety Profile: The drug was well-tolerated. Severe adverse events were infrequent and evenly balanced between the placebo and treatment groups, with mild gastrointestinal issues being the most common side effect.
• Data Value: Despite the negative trial results, the study successfully generated valuable metrics validating patient-reported and clinician-rated assessment scales for measuring the highly subjective burdens of central fatigue and brain fog in future trials.

I found out about this from
A PBC Foundation Q and A session as the expert presenting mentioned they were about to travel to Stockholm and look at the results data and they said to look out for the press release on Fri 30 Oct.

Dr Mark Swain in Canada and Professor David Jones in UK are two key people involved in this area of ongoing research looking at fatigue.

1 day ago (edited)
myPBCteam

Fatigue is absolutely one of the most impactful symptoms of PBC, affecting around 65% of people — and up to 20% experience severe, life-altering fatigue. It's a very real and well-recognized challenge.

Researchers have explored treatments specifically for PBC-related fatigue, but progress has been slow. One clinical trial Show Full Answer

Fatigue is absolutely one of the most impactful symptoms of PBC, affecting around 65% of people — and up to 20% experience severe, life-altering fatigue. It's a very real and well-recognized challenge.

Researchers have explored treatments specifically for PBC-related fatigue, but progress has been slow. One clinical trial tested a stimulant to reduce fatigue in PBC, but it didn't show significant improvement over a placebo. Unfortunately, many treatments that help manage PBC itself don't seem to ease fatigue. The frustrating reality is that fatigue in PBC isn't fully understood yet. Researchers believe it involves two types:

- Central fatigue — linked to brain and nervous system dysfunction, possibly caused by bile acid buildup (cholestasis)
- Peripheral fatigue — linked to muscle weakness and high lactic acid levels in muscles

Because fatigue research in PBC is still evolving, it's worth speaking with your specialist about any current or upcoming clinical trials. Websites like ClinicalTrials.gov are a great place to search specifically for PBC fatigue studies, as listings are updated regularly.

1 day ago
A myPBCteam Member

There is also "RELIEF: Multimodal Prehabilitation to Treat Fatigue in Patients With Primary Biliary Cholangitis" (ClinicalTrials.gov ID: NCT07161245).
The study is designed to directly address the persistent, debilitating fatigue and "brain fog" that affects up to 60% of people living with PBC. It evaluates how a structured, non-drug approach—combining personalized physical exercise, nutritional guidance, and psychological support—impacts fatigue severity and the underlying muscle and brain changes.

1 day ago

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A myPBCteam Member asked a question 💭
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