Postural Orthostatic Tachycardia Syndrome (POTS) and Dysautonomia: International Multidisciplinary Expert Consensus, Sivakoti et al, 2026

[InitialConditions]

Postural Orthostatic Tachycardia Syndrome (POTS) and Dysautonomia: International Multidisciplinary Expert Consensus

Spoiler: Authors

Sivakoti, Kirti; Cortez, Melissa; Fedorowski, Artur; Fudim, Marat; Lau, Dennis H; Novak, Peter; Rowe, Peter C.; Schofield, Jill R.; Blitshteyn, Svetlana

Abstract
Background
Current diagnostic criteria for postural orthostatic tachycardia syndrome (POTS) require history of orthostatic intolerance and heart rate elevation of ≥30 bpm in adults or ≥40 bpm in adolescents during a 10-minute standing or a tilt table test. Many patients with orthostatic intolerance experience autonomic dysfunction and functional impairment despite not meeting the required heart rate increase. These patients remain undiagnosed, untreated and excluded from research studies. We sought to develop international multidisciplinary consensus guidance statements addressing the recognition, diagnosis, treatment, functional impact, and future directions of POTS and non-POTS dysautonomia using a modified Delphi methodology.

Methods
A multidisciplinary international expert panel of pediatric and adult specialists in POTS and dysautonomia, including patient advocacy representatives, voted on consensus statements developed through iterative expert discussion, meetings and literature review by an independent core collaborative group consisting of clinicians specializing in POTS and dysautonomia. Statements addressing pathophysiology, diagnosis, treatment, education, advocacy, and research priorities were evaluated. Consensus was predefined as ≥70% agreement.

Results
31 consensus statements were evaluated by the international multidisciplinary panel of experts from 7 countries (40 contributors). All statements achieved very strong (> 90%) to unanimous (100%) consensus, with 24 of 31 statements achieving unanimous consensus. Qualitative analysis of comments highlighted need for standardized nomenclature and classification system.

Conclusion
This international multidisciplinary consensus guidance statement addressed an unmet clinical gap by providing recommendations for recognition, diagnosis and management of POTS and non-POTS dysautonomia. Adoption of these recommendations may improve diagnostic accuracy, patient care, clinical trial inclusion, and future therapeutic development.

Web | DOI | The American Journal of Medicine

 

[Utsikt]

In this consensus statement, we use the term “dysautonomia” to refer to disorders and dysfunction of the autonomic nervous system resulting in orthostatic intolerance and multisystemic autonomic symptoms. Table 1 lists the definitions of POTS and other common autonomic disorders.

For the purposes of this consensus statement only, we use the term “non-POTS dysautonomia” to refer to patients with clinically significant orthostatic intolerance and/or autonomic dysfunction who do not meet established heart rate elevation criteria for POTS, but whose symptoms, functional impairment and clinical presentation are otherwise similar to POTS and consistent with dysautonomia.

First of all: the term dysautonomia makes no sense, and it implies knowledge about pathology that we simply do not have.

Secondly, they seem to recognise that many people with OI do not fulfil the POTS heart rate criteria, but instead of realising that we should bin the POT part and talk about OI instead, they now propose that we talk about a separate but possibly not different concept that they have tentatively labeled «non-POTS dysautonomia».

What a mess..

And the also recommend all kinds treatments and intervention without specifying what they are except for increasing salt and fluid intake and exercising if you can.

They also have the gall to claim that none of them have any conflicts of interests. Sure, it’s not like some of them are running clinics for POTS and writing books about it.

 

[InitialConditions]

First of all: the term dysautonomia makes no sense, and it implies knowledge about pathology that we simply do not have.

What is the claim about pathology?

Secondly, they seem to recognise that many people with OI do not fulfil the POTS heart rate criteria, but instead of realising that we should bin the POT part and talk about OI instead, they now propose that we talk about a separate but possibly not different concept that they have tentatively labeled «non-POTS dysautonomia».

This is just terminology for the sake of the paper. They explicitly say that they are not proposing this term is introduced beyond the scope of the paper.

They also have the gall to claim that none of them have any conflicts of interests. Sure, it’s not like some of them are running clinics for POTS and writing books about it.

The conflicts of interests are listed at the end of the paper, under Disclosures.

 

[ME/CFS Science Blog]

What is the claim about pathology?

The name dys-autonomia suggests these patients have a defect in the autonomous nervous system which we don't know yet.

 

[Utsikt]

What is the claim about pathology?

From the statements (that got 40/40 votes):

POTS is a syndrome with multiple etiologies involving neurologic, cardiovascular and other multi-systemic manifestations.

POTS is a disorder of the autonomic nervous system.

POTS is one phenotype in the broader category of dysautonomia (also known as autonomic dysfunction).

They also included this bit about MCAS, hEDS and other diagnoses and labels (also 40/40):

Both POTS and non-POTS dysautonomia can be primary disorders or occur in association with systemic disorders, including hypermobility spectrum disorders/hypermobile Ehlers-Danlos syndrome, migraine, small fiber neuropathy, mast cell activation syndrome, Long COVID, and others.

This is just terminology for the sake of the paper. They explicitly say that they are not proposing this term is introduced beyond the scope of the paper.

That’s why I said «tentative». The point was that they are proposing a new category of «dysautonomia that isn’t POTS», when the obvious thing to do is to bin POTS and dysautonomia and focus on OI.

The conflicts of interests are listed at the end of the paper, under Disclosures.

Look under Competing Interests.

Under Disclosures, SB is the only one that has disclosed non-monetary ties to organisations, and e.g. Rowe has not said anything about his books or clinics or various roles.

 

[rvallee]

The name dys-autonomia suggests these patients have a defect in the autonomous nervous system which we don't know yet.

Which is something that the woo-inclined communities have largely adopted, the idea of a dysregulated nervous system that must be, usually they will use "calmed", is widely adopted in psychosomatic models. It's accepted as a fact, without any biological explanation, preferring alternatives such as this being a fear or stress response. Which would actually negate the idea of this being dysregulation.

In fact, it might be working fine, just responding to an upstream issue that is hard to identify. Or not, but no one knows what's specifically wrong, or whether this definition of wrong is accurate. Is an autoimmune illness a dysregulated immune system? Or one that is working as intended in the presence of autoantibodies that shouldn't be there, activating normal functions, all of which are doing their usual job?

Things being in places where they shouldn't be is definitely a common type of problem in all sorts of systems, including information, engineering and social systems. Edge cases, basically.

 

[DHagen]

Which is something that the woo-inclined communities have largely adopted, the idea of a dysregulated nervous system that must be, usually they will use "calmed", is widely adopted in psychosomatic models. It's accepted as a fact, without any biological explanation, preferring alternatives such as this being a fear or stress response. Which would actually negate the idea of this being dysregulation.

For the patient attempting to figure out what is going wrong, the fact that these "woo-inclined communities" now include representatives or units of basically every major medical institution in the USA, Canada, and across much of Europe, each of which diagnoses "dysautonomia" (usually as a sort of "secondary dysautonomia" in my experience, meaning that yes, it is "downstream" of some unknown something) on a regular basis, will inevitably lead to some confusion and consternation when they subsequently encounter mockery of the term here. That's not to say that all of these institutions are correct on this point, but rather to once again emphasize that this has become mainstream in much of the medical community - and even those who do not accept it are likely to redirect a patient with these issues to a department or colleague who does.

For my part, a term that describes problems, whatever their origin, that manifest through multiple symptoms connected to autonomic functioning seems useful. I understand that I am very much in the minority on this point, but I don't see that "dysautonomia" presents a great problem than "ME/CFS" when it comes to terminology. The problem is that we do not understand what is going on and it will not be solved until we do, should that ever happen.