Moving from the present to the future of Postural Tachycardia Syndrome – What we need 2018, Raj

[Milo]

Moving from the present to the future of Postural Tachycardia Syndrome – What we need

This is sort of related to ME as many, many of us have POTS as comorbidity. This article discusses the needs of the disease and as simple as this artile is, it is also very relevant for ME. In fact you could replace POTS with ME in the article and it would totally make sense.

Dr Raj is a Calgary based cardiologist that specializes in POTs and does pots research.

Abstract

Our understanding about Postural Tachycardia Syndrome (POTS) has advanced significantly over the last 25 years.

Despite the significant advances that have been made in defining the syndrome and finding some treatments for our patients, there is much work to be done to significantly improve our understanding of the disorder and improve therapeutics.

In this article, 5 NEEDS are identified that will be required over the next several years if we want future care to move beyond where we are in the present.

These include:
(1) a NEED for better administrative data to track POTS diagnoses and the impact of the illness;
(2) a NEED to improve physician awareness about POTS, which is a prerequisite for improved access to care;
(3) a NEED to better understand the multiple pathophysiologies underlying POTS and the roles of the different medical comorbidities;
(4) a NEED for data on effective treatments for POTS; and
(5) a NEED for more research funding to study POTS.

Highlights

• It has been 25 years since the Mayo Clinic first described POTS in 1993.
  
  
• There have been important advances in our understanding of pathophysiological mechanisms of POTS.
• 
  
• There have been important advances in acute treatments that help treat the hallmark hemodynamics issues in POTS.
• 
  
• The role of associated co-morbidities is not well understood in POTS.
• 
  
• We need high quality clinical trial data to guide treatment
  
  We need to understand if and how POTS endophenotypes should guide initial treatment of POTS.

Link to paper: https://www.autonomicneuroscience.com/article/S1566-0702(18)30076-6/fulltext

 

[Sasha]

In other words, they need everything - follow-up of patients, education of doctors, an understanding of the condition, effective treatments...

 

[Milo]

In other words, they need everything - follow-up of patients, education of doctors, an understanding of the condition, effective treatments...

Yep. Everything. Just like us.