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Also notable in the POTS literature: not a single decent prevalence or epidemiological study. Almost all single-center observational studies which are probably affected by referral and selection bias. Also no prognosis studies, some say that half of the patients spontaneously recover within 3...

Does not look like a very useful design, at first glance.

Also from the WSJ article (which mentions Peter Rowe):

The following quote is taken form a 1999 article in the Wall Street Journal Some Doctors Operate on People Diagnosed With Chronic Fatigue - WSJ (available here: https://www.anapsid.org/cnd/diagnosis/chiari.html)

In 2000 The American Association of Neurological Surgeons published a statement about this: AANS - AANS Position Statement on the Use of Cervical Decompression for Chronic Fatigue Syndrome

This article in the The Massachusetts CFIDS/ME & FM Association Spring 2000 provides some background: https://massmecfs.org/more-resources-for-differential-diagnosis/172-cfidsfm-and-chiari-malformation-surgery "Dr. Michael J. Rosner, a primary proponent of the theory and the surgeon who has...

At the turn of the millennium neurosurgeon Michael J. Rosner argued that decompression of Craniovertebral Stenosis led to improvements in fibromyalgia and CFS patients. Success stories of brain surgery were shared online and in media reports but eventually it would lead to controversy and...

The senior author is David Robertson who sadly, passed away this year. His team has done the most interesting POTS studies from what I can tell. In Remembrance of Dr. David Robertson (1947-2024) - The American Autonomic Society

Interested in your thoughts on this @Jonathan Edwards

From the same research group, also old but interesting: Effects of volume loading and pressor agents in idiopathic orthostatic tachycardia G Jacob 1, J R Shannon, B Black, I Biaggioni, R Mosqueda-Garcia, R M Robertson, D Robertson Collaborators, Affiliations PMID: 9244228 DOI...

An old study but it seems to be one of the more interesting and higher quality ones on POTS. It is almost 25 years old: does anyone know if the results have been replicated by others?

Abstract Background: The postural tachycardia syndrome is a common disorder that is characterized by chronic orthostatic symptoms and a dramatic increase in heart rate on standing, but that does not involve orthostatic hypotension. Several lines of evidence indicate that this disorder may result...

Was looking for evidence that orthostatic tachycardia is pathologic, I found this interesting but tiny experimental study that seems to be arguing the opposite: that tachycardia is important for orthostatic tolerance (not intolerance). Effects of cholinergic and beta-adrenergic blockade on...

Currently looking further into Long Covid studies. IJERPH | Free Full-Text | Detecting Orthostatic Intolerance in Long COVID in a Clinic Setting (mdpi.com)

Another interesting one: Orthostatic Intolerance in Adults Reporting Long COVID Symptoms Was Not Associated With Postural Orthostatic Tachycardia Syndrome - PubMed (nih.gov) Peak heart rate during the standing test did not predict OI and the majority of Long Covid patients with tachycardia did...

Sad news: PC-POTS Update Results from the Phase 2 ALPHA study of efgartigimod in post-COVID-19-mediated postural orthostatic tachycardia syndrome (PC-POTS) show that treated patients had no clinically meaningful improvement compared to placebo on the total Malmö POTS symptom (MaPS) score and...

Thanks!

Yes that is probably an issue and your own measurements show that very clearly: there seems to be a large inter-individual variability: one day you have increases with 45, other times only 11 bpm. Some argued that orthostatic tachycardia measurements during standing or tilt testing are a bit...

@Nightsong Do you know of any studies that measured the prevalence of POTS among OI patients? For example: clinics that report the % of POTS in the patients with OI that get referred to them. I found this one paper that says that only 19% of their OI patients fulfilled POTS criteria. Patients...