Image description: The picture shows a person with their head in hands. 2 inner pictures show a person having their pulse taken and a computer keyboard which says survey. The title reads: The ME Association Postural Orthostatic Tachycardia Syndrome Survey Results. ME Association logo bottom right.

The ME Association Postural Orthostatic Tachycardia Syndrome Survey Results 

In October we covered the Postural Orthostatic Tachycardia Syndrome (PoTS) awareness week and collaborated on social media with PoTS UK to help raise awareness and increase the reach of posts on respective pages.  We also completed a website survey and wanted to share the results. 

Postural Orthostatic Tachycardia Syndrome (PoTS) is a condition caused by abnormal functioning of the autonomic nervous system (ANS) which controls heart rate and blood pressure. Where there is any dysfunction, it is called dysautonomia. 

PoTS UK figures suggests 27% of the ME/CFS community have a diagnosis of Postural Tachycardia Syndrome (PoTS) and around 12% of people with Long Covid also have PoTS, although some Long Covid research studies indicate that this figure is significantly higher.

Dr Charles Shepherd, Honorary Medical Adviser to the ME Association. 

The website survey attracted 1013 responses. A snapshot of the results are as follows: 

  • 46% of respondents had symptoms of PoTS for 0-4 years.  
  • 25% had symptoms of PoTS for 12 years or more. 
  • 33% of people were diagnosed within 0-1 years of symptoms developing. 
  • 32% were diagnosed within 2-4 years. 
  • 75% found symptoms to be worse during hot weather. 
  • 74% increased fluid intake and 57% increase salt intake to try to manage symptoms. 
  • 39% take medication. 

The top 3 PoTS symptoms were: 

  • Dizziness or light-headedness or presyncope (almost fainting) (93%).  
  • Palpitations/Tachycardia (rapid pulse rate) (91%). 
  • Syncope (fainting or blackouts) (25%). 

The top 3 other symptoms were: 

  • Debilitating Fatigue 94%. 
  • Cognitive Dysfunction (brain fog) 94%. 
  • Headache 80%. 

The top 3 comordities (medical conditions diagnosed as well as PoTS) were: 

  • ME/CFS 77%. 
  • Irritable Bowel Syndrome (IBS) 38%. 
  • Migraine 35%. 

Thank you to everyone who took the time to share posts, complete the survey, and support PoTS awareness week. 

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