‘ME: one third of patients ‘wrongly diagnosed’ | Daily Telegraph | 17 June 2014

June 17, 2014

From the front page of today's Daily Telegraph, 17 June 2014 (story by Sarah Knapton, Science Correspondent).

A third of the people who believe they have Chronic Fatigue Syndrome, or ME, may be suffering from a treatable illness, a professor claims.

There is currently no medication for ME, which is characterised by fatigue, muscle aches and memory loss.

However, Prof Julia Newton, of the Institute for Ageing and Health at Newcastle University, believes that doctors often wrongly diagnose ME when people are suffering from Postural tachycardia syndrome (PoTS).

PoTS is a disorder of the nervous system that disrupts the body’s automatic functions, such as breathing.

Symptoms include dizziness, rapid heartbeat, fainting, nausea, excessive tiredness and trembling. Young women are most likely to be affected by the ailment, which afflicts about 110,000 people in Britain.

It can be treated with beta-blockers and lifestyle changes. However, few doctors have ever heard of it.

Prof Newton says about 80,000 of the 250,000 ME suffers may have the condition.

“I would think that around one third of people with chronic fatigue syndrome, if they were properly tested, would have PoTS,” she said.
“PoTS is an abnormal response of the nervous system, but it is a spectrum, so some people will feel dizzy on standing, while others will actually black out. It affects the part of the nervous system which is outside our control.”

Although doctors are unclear as to what causes the problem, Prof Newton believes it may be caused by a viral infection or hormonal changes.

Prof Newton’s team studied 84 members of the national charity and support group PoTS UK and a further 52 patients who had been diagnosed at an NHS falls clinic in Newcastle between 2009 and 2012.

The participants completed questionnaires to gauge levels of fatigue; anxiety and depression; ability to carry out tasks; and mental power.

It was found that people with PoTS were predominantly young, well-educated and female.

Prof Newton said: “Our experience suggests that some patients never recover.”

The findings were reported in the online journal BMJ Open.

The full BMJ Open paper, Postural tachycardia syndrome is associated with significant symptoms and functional impairment predominantly affecting young women: a UK perspective, was published yesterday (16 June 2014) and can be downloaded HERE.

Dr Charles Shepherd, medical adviser to The ME Association, commented:

“Problems associated with the way in which the autonomic nervous system controls heart rate, blood pressure and blood flow to vital organs in the body, including POTS, are very common in people with ME/CFS. Unfortunately, they often go unrecognised and untreated.
“Research into this aspect of ME/CFS is summarised and referenced in the research and treatment sections of the MEA purple booklet. We also have an MEA information leaflet that covers the management of symptoms caused by autonomic nervous system dysfunction: orthostatic intolerance and hypotension, POTS (postural orthostatic tachycardia syndrome) etc.”

Here's how The Independent reported the news Little-known heart condition found affecting mostly educated young women

And an analysis of the BMJ Open study and the press reports was put on the NHS Choices website on June 17: http://www.nhs.uk/news/2014/06June/Pages/is-me-often-a-misdiagnosed-heart-rhythm-problem.aspx

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