In 2007, an ME Research UK-funded investigation showed that around three-quarters of ME/CFS patients had dysfunction of the autonomic nervous system. In fact, for many people with the illness, “orthostatic” symptoms on standing can be the most disabling, particularly standing still which can bring on dizziness, altered vision, nausea, fatigue etc (see our “Standing Up for ME”).
Several months ago, a report from the University of Newcastle showed that 13% of ME/CFS patients had postural orthostatic tachycardia syndrome (POTS), a form of autonomic dysfunction where orthostatic intolerance is associated with an increase in heart rate when moving from lying down to standing up. The POTS group was younger, had less depression and daytime sleepiness, and exhibited significantly more orthostatic symptoms and symptoms that affected their quality of life than other patients. Now, a study from the Australian National University in Canberra has confirmed these findings, detecting POTS in 11% (33/306) of patients seen at the Melbourne CFS Discovery Clinic from 2009–2012. As before, those affected were younger than patients without POTS, had a shorter length of illness, and experienced more problems standing.
In their discussion, the Australian researchers point out that the current Australian CFS guidelines do not promote haemodynamic assessment in the diagnostic work-up, and that current UK CFS/ME NICE guidelines actively discourage head-up tilt-testing or other haemodynamic testing in the assessment of patients. They would like to see this changed, and say that, “Given the opportunity for successful intervention, especially in younger patients in whom POTS is more prevalent, it is recommend that haemodynamic assessment becomes part of CFS diagnostic investigations with the aim of limiting the life-long disability”.[Image: tilt table]