Canadian Cardiovascular Society Position Statement on Postural Orthostatic Tachycardia Syndrome (POTS) and Related Disorders of Chronic Orthostatic I

https://www.sciencedirect.com/science/article/abs/pii/S0828282X19315508
Edited to add: Full article https://www.onlinecjc.ca/article/S0828-282X(19)31550-8/fulltext

Canadian Journal of Cardiology
Volume 36, Issue 3, March 2020, Pages 357-372

 

Full article https://www.onlinecjc.ca/article/S0828-282X(19)31550-8/fulltext

 

Thanks for that link, @Denise

I found this table interesting:

https://www.onlinecjc.ca/action/showFullTableHTML?isHtml=true&tableId=tbl1&pii=S0828-282X(19)31550-8

It summarizes five terms they've defined for different criteria: POTS, POTS plus, PSWT, PSWT plus, and PTOC.

POTS = postural orthostatic tachycardia syndrome
PSWT = postural symptoms without tachycardia
PTOC = postural tachycardia of other cause

Edited to add: "These newly described disorders were created on the basis of expert opinion of the primary panel and will need to be evaluated to determine if further modifications are required."

 

Thanks. I've added that to the first post now.

 

This position statement seems to differ quite a bit from that of the recent Van Campen article discussed here
https://www.s4me.info/threads/cereb...an-campen-et-al-2020.13583/page-5#post-238383

https://www.sciencedirect.com/science/article/pii/S2467981X20300044

 

I think it's the difference between POTS and generalised OI. Many patients with ME have symptoms of OI, even if they don't meet POTS criteria. It's just that POTS is a catchier name, so people use it to refer to ME-OI.

 

So according to this, people with ME who meets POTS criteria should be diagnosed as POTS plus, and those who don't meet POTS criteria but who have orthostatic intolerance, should be diagnosed as PSWT plus?

 

When I was first learning about ME, about 1984 after becoming ill in 1968, one of the symptoms they spoke about was feeling bad when standing still. This had always been a problem for me and I often walked rather than stand waiting for a bus. Both had payback but the latter gave less.

In recent years this has become known as POTS but that syndrome may not encompass everything that is going on in ME and we have to be careful that patients who do not get the tachycardia of POTS have it recorded as another negative test showing that we imagine our symptoms.

It is good if the phenomenon is being more widely examined and not restricted to a narrow definition.

 

It is important to distinguish between POTS and orthostatic intolerance. POTS is a specific condition with a specific definition, albeit still poorly understood. Orthostatic intolerance is a symptom that is associated with POTS but not sufficient of itself for a diagnosis of POTS, rather like the relationship between the symptom of fatigue and the condition ME. Also orthostatic intolerance as a symptom like fatigue may potentially have very diverse causes. Further we need to have a clearer definition of orthostatic intolerance to be certain different people are meaning the same thing by this term.

Both orthostatic intolerance and POTS are increasingly found to be associated with ME, but can not with certainty say they are causally related to the ME or coincidental. How does orthostatic intolerance in ME relate to orthostatic intolerance in POTS occurring in isolation? Is POTS a unitary condition? Does POTS occurring in conjunction with ME mirror or diverge from POTS occurring in isolation? Etc.

Like so much in this area there is a need for clearer definitions and a better understanding of the phenomenology of orthostatic intolerance as well as experimental investigation.

So many of us with ME have issues relating to being upright, but not all of us fit the definition of POTS. However can we yet say what are the significant descriptors of our orthostatic issues and are they the same from patient to patient?

 

The hypothalamus was said to be dysfunctional in ME in the old days. It is part of the brain that controls the autonomic nervous system and helps keep the body in homeostasis.

Temperature is often difficult to control in ME and I have felt that hypothalamus problems explain a lot of my symptoms including the dysautonomia and POTS.

Mt personal view is that ME is causing damage and that POTS and so on is a consequence of that damage. looking at people with POTS who do not have ME may not help us.