PoTS in the Papers

As many of you will know, last week (10th October) the Mail on Sunday ran a full page article about PoTS.

Let’s talk hula hoops, first of all!  

We know the hula hoop based headline shown on the online version was disappointing and frustrating to say the least but as so many of you have acknowledged, this is a ‘click bait’ tactic and whilst it wouldn’t be our choice of headline, we think the article itself did a fantastic job in educating and raising awareness.

We have pulled out parts of the article and think it is important to recognise that this information has been in a National Newspaper and also shared widely online since (links below). The readership figures of the Mail on Sunday, The Sun, The Mail online, The Metro to name just a few of the papers who also ran the article are enormous and media feeds media! We hope that we can now build upon this and continue to increase awareness.

This without doubt has been the biggest media exposure we have achieved for PoTS so far.

PoTS UK know better than anyone the challenges you face. Our purpose is to improve the limited and often poor services offered by educating and raising awareness. Our aim is the same as yours. So please, we urge you to look past the headline and accept that papers will do this. The content in the article is good and we urge you to read it again and share it (maybe with a comment asking people to look past the trivial headline!).

What did the article get right?

Extracts from the article that really highlight some key information that we are trying to get out are shown below.

How many people may have read this who have been wondering what is wrong with them? How many medical professionals may have read this and will now sit up and take a bit more notice?

• Long Covid clinics are not all routinely testing for the syndrome, a leading clinician claims, meaning many patients may be going undiagnosed and missing out on effective treatments.
• One approach to tackling PoTS is consuming more salt, which pushes up the blood pressure, helping ease symptoms
• The syndrome is caused by abnormal functioning of the autonomic nervous system, which manages involuntary bodily processes, one of which is the regulation of blood pressure and heart rate when we change posture, such as going from reclining to standing. In this movement, the effect of gravity means there is a slight decrease in the amount of blood flow to the upper body but, in most people, the nervous system quickly recalibrates – blood vessels in the lower limbs narrow and heart rate increases slightly to maintain blood supply to the heart and brain.
• In people with PoTS, this doesn’t happen as quickly. As a result, when there is a drop in blood flow to the upper body the heart begins to race in order to compensate, triggering multiple symptoms, including extreme dizziness and even fainting. Sufferers also experience fatigue and brain fog.
• Patients are also more likely to suffer chronic fatigue syndrome, and Ehlers-Danlos syndrome, a collection of inherited syndromes that cause very flexible joints and stretchy and fragile skin. Due to a lack of awareness about PoTS, patients typically suffer with symptoms for seven years before seeking a diagnosis.
• But many healthcare professionals haven’t heard of PoTS, so don’t consider it even if patients have typical symptoms.’
• To add to the difficulties sufferers face, there are few specialists in the UK, meaning waiting lists for treatment can be eight months or more.
• The standard test is simple: patients are asked to lie down for a few minutes, then stand up. Their heart rate, blood pressure and any symptoms are recorded over ten minutes. If there is a sustained increase in heart rate of more than 30 beats per minute in adults, and 40 beats per minute in children, then a diagnosis of PoTS might be considered.

This article has appeared in various national papers, which we hope will help to increase awareness amongst both medical professionals and patients: