Post

1) Many patients with orthostatic intolerance do not meet the require heart rate increase of POTS criteria. This new expert consensus paper argues that that this group deserves more recognition, including a separate diagnosis and ICD-code.

2) In the paper they call this group "Non-POTS dysautonomia" but explain that this is just a preliminary description. I personally do not like this term because it still referring to POTS and the term dysautonomia is problematic in itself.

3) Dys-autonomia suggests there is a known, measurable defect in the autonomous nervous system - something we don't fully know yet. POTS was originally coined for patients with orthostatic intolerance but few signs of clear autonomic dysfunction.

4) IMHO the core problem is what to do with patients who have orthostatic intolerance symptoms and disability without a known cause and without clear signs of dysautonomia. The distinction between those with and without orthostatic tachycardia (POTS or not) may be less important

5) You can see this in the consensus statement which argue that both groups may have similar impairments, symptoms and that the same treatments may be useful for both. Orthostatic tachycardia is a useful clinical feature but perhaps not sufficient to base a syndrome on.

6) The panel of 40 experts formulated several other consensus statements, including for example, that "POTS and other autonomic disorders are not functional neurologic disorders" and that POTS is not caused by fear of standing or avoidance behavior.

7) The 40 experts were not anonymous and there was only one round of voting because of high consensus on most statements. For ME/CFS, experts included Stephanie Grach, Kathryn Hoffmann, Peter Rowe and Michael Stingl.