Low sensitivity of abbreviated tilt table testing for diagnosing postural tachycardia syndrome in adults with ME/CFS, 2018, van Campen, Rowe & Visser

[Andy]

Introduction: Orthostatic intolerance is common among individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In some ME/CFS case definitions, orthostatic intolerance is considered a core feature of the disorder. Some studies have employed tilt table tests lasting 2-5 minutes to diagnose one common form of orthostatic intolerance, postural tachycardia syndrome (POTS). We examined the diagnostic yield of abbreviated durations of tilt testing in adults meeting criteria for ME/CFS, and identified the proportion with POTS misdiagnosed using testing of less than 10 minutes.

Methods: Eligible participants were consecutive individuals satisfying study criteria for ME/CFS and POTS evaluated at the Stichting CardioZorg (SCZ, Hoofddorp, NL) between November 2012 and August 2018. Individuals being treated with medications commonly used to manage orthostatic intolerance were excluded. Head-up tilt table testing involved 15 minutes of supine posture then 20 minutes at 70 degrees upright. Only the data from the first 10-minutes upright were used. POTS was defined as an increase in HR during a maximum of 10 minutes of upright tilt of at least 30 beats per minute (bpm), in the absence of either classical or delayed orthostatic hypotension. We measured the time until HR criteria for POTS were reached using survival curves, and compared survival curves between subgroups divided by age, sex, disease duration, and degree of hypocapnia during the test.

Results: Of 627 individuals with ME/CFS evaluated during the study period, 155 met criteria for POTS. The median time to reaching HR criteria for POTS was 3 minutes. A two-minute tilt table test would miss 55% (95% CI, 48 - 63%) of those meeting POTS criteria over the course of 10 minutes upright. The median time to reaching HR criteria for POTS did not differ by sex, age, duration of ME/CFS, or hypocapnia during tilt.

Conclusions: Abbreviated tilt table testing misses a substantial proportion of those ultimately diagnosed with POTS during a 10-minute tilt table test, and should be abandoned for the clinical diagnosis and in epidemiologic studies designed to estimate the prevalence of POTS among those with ME/CFS.

Abstract only at moment, https://www.frontiersin.org/articles/10.3389/fped.2018.00349/abstract

 

[Mithriel]

So the 35 seconds I managed to stand in the GPs surgery were not a good reason for the cardiologist to say confidently that I didn't have POTS? Well, there's a shock!

 

[Sasha]

Pity this doesn't address NMH (another form of OI), which requires a considerably longer test.

 

[Sasha]

So the 35 seconds I managed to stand in the GPs surgery were not a good reason for the cardiologist to say confidently that I didn't have POTS? Well, there's a shock!

Same happened to me, but in a cardiologist's office, who dismissed the published criteria that I mentioned. Took me five years to get my OI diagnosed via a longer test.

 

[Inara]

Well, that is quite interesting. Thanks @Andy. I would also be interested in the comparison of poor man's tilt table test with tilt table test (or does that exist?).

 

[Kalliope]

Coincides with their paper
Passive standing tests for the office diagnosis of postural tachycardia syndrome: New methodological considerations (Peter Rowe team 2018) discussed in this thread.

I was recently turned down for an assessment for POTS from my local hospital and am considering trying the NASA 10 minutes lean test myself at home. https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf

Seems very few doctors here in Norway have heard about POTS. The first patient who got diagnosed was in 2015. I got the impression that my local hospital turns down referrals because they believe this is just a fad among people having read about it on internet.

 

[obeat]

There is a paper by S R Raj comparing TTT and standing tests but I can't get it to upload to site.

 

[andypants]

Coincides with their paper
Passive standing tests for the office diagnosis of postural tachycardia syndrome: New methodological considerations (Peter Rowe team 2018) discussed in this thread.

I was recently turned down for an assessment for POTS from my local hospital and am considering trying the NASA 10 minutes lean test myself at home. https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf

Seems very few doctors here in Norway have heard about POTS. The first patient who got diagnosed was in 2015. I got the impression that my local hospital turns down referrals because they believe this is just a fad among people having read about it on internet.

I did the poor mans ttt at home and qualified for POTS in the first minute of standing. I’m now pushing for a referral to Riksen, where they apparently have a tilt table, but of course GP haven’t heard of POTS or OI so doesn’t see the point.

 

[Andy]

Full paper now available at https://www.frontiersin.org/articles/10.3389/fped.2018.00349/full