17th June 2014 – As many as 27% of people given a diagnosis of ME/CFS actually have a different syndrome, frequently not recognised in the UK, called PoTS which may be amenable to treatment.
According to a small study published in the online journal BMJ Open, PoTS (Postural tachycardia syndrome) predominantly affects young well-educated women but is poorly understood and inconsistently treated.
In the US, PoTS is thought to affect around 170 people per 100,000 of the population, 1 in 4 of whom is disabled and unable to work.
However, in the UK PoTS is often not recognised or is wrongly attributed to anxiety, panic disorder or chronic fatigue syndrome (CFS).
Symptoms
PoTS is an abnormal response by the autonomic nervous system to becoming upright. The autonomic nervous system is a complex feedback mechanism that among other things can adjust heart rate and blood pressure to compensate for changes in position such as from lying to standing.
Orthostatic intolerance is a term that is sometimes used to describe the symptoms of PoTS. It means symptoms that occur on standing and are relieved by lying down.
It is associated with an excessively rapid heartbeat, or tachycardia. Other symptoms include dizziness, fainting, nausea, poor concentration, excessive fatigue and trembling, sometimes making even simple routine activities, such as eating and bathing, difficult.
The impact of the syndrome has been likened to the level of disability associated with serious and debilitating long term conditions, such as chronic obstructive pulmonary disease (COPD) and congestive heart failure.
Latest research
Researchers at Newcastle University’s Institute for Ageing and Health wanted to find out if PoTS affects particular groups of people, and how.
They therefore assessed 84 members of the national charity and support group, PoTS UK, and 52 patients diagnosed with the syndrome at the NHS falls and syncope (fainting) clinic in Newcastle, between 2009 and 2012.
All participants completed a set of questionnaires specifically aimed at gauging levels of fatigue; sleepiness; orthostatic intolerance; anxiety and depression; ability to carry out routine tasks; and brain power.
The profile of the two groups was broadly similar, and indicated that people with PoTS are predominantly young (average age of diagnosis 30-33) well-educated to degree or postgraduate degree level, and female.
Poor health had prompted a significant number to change their jobs or give up working altogether, and both groups experienced high levels of fatigue, daytime sleepiness, orthostatic symptoms, anxiety and depression, memory and concentration problems, and considerable difficulty carrying out routine tasks.
The researchers say around 1 in 5 people had been diagnosed with CFS and a similar proportion had Ehlers-Danlos syndrome, a group of inherited connective tissue disorders. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. This diagnostic confusion suggests that there may be an underlying, overlapping cause.
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