The British Medical Journal publishes occasional articles by patients about their experiences that offer lessons for doctors. A recent one was by Matilda Hale in conjunction with Professors Julia Newton and David Jones of Newcastle University. Matilda has primary biliary cirrhosis, an autoimmune liver disease with fatigue as a prominent symptom, and some elements of her journey will be recognised by ME/CFS patients, particularly the day-to-day struggle and the scepticism of GPs and hospital doctors.
It was Prof. Newton and Prof. Jones’ experiences of primary biliary cirrhosis as an illness and its effects on patients like Matilda that sparked off their interest in fatigue as an overarching symptom common to many different illnesses. This, in turn, led to their involvement in ME/CFS, which they have shown to involve far higher levels of total fatigue than other comparable conditions. For example, one ME Research UK-funded investigation has shown that ME/CFS has a total fatigue impact score of 102, compared with 41 in primary biliary cirrhosis and 18 in primary sclerosing cholangitis.
Reference: A Patient’s Journey. Fatigue in primary biliary cirrhosis. Hale et al. BMJ 2012; 345: e7004