Vascular Compression Syndromes in Postural Orthostatic Tachycardia Syndrome (POTS)- a Preliminary Report

[ScottTriGuy]

Moderator note: Thread moved from 'General ME/CFS News' sub-forum.


This article was posted on PR, and it really speaks to my symptoms and diagnosis of Thoracic Outlet Syndrome.

It ties together POTS with TOS and MCAS and other symptoms often seen in ME folks.

https://mermaidcentralresearch.com....ion-Syndromes-in-POTS-A-Preliminary-Study.pdf

In a study of 33 consecutive patients with established POTS, all were shown to have one or more venous compression syndromes. 28 were shown to have popliteal vein compression syndrome (17 with complete obstruction and 11 with partial obstruction,) while 25 (of 27 tested) had thoracic outlet vein (axillary or subclavian) compression. Twenty had both popliteal (either partial or complete) and thoracic outlet vein compression.


And I thought this was also interesting:

...studied 85 Multiple Sclerosis patients demonstrating all had undiagnosed thoracic outlet syndrome, unilateral or bilateral, and usually predominantly of a venous type.

 

[Jonathan Edwards]

This article was posted on PR,

I don't this deserves to be called an article. It is pseudoscience dressed up in the form of a scientific article by a private clinic. Anybody can make stuff like this up. It is full of contradictions. It is stuff like this that makes me think the whole POTS/EDS/MCAS story is junk. There are just people in university hospital clinics who are better at dressing up the pseudoscience and getting it published.

 

[ScottTriGuy]

whole POTS/EDS/MCAS story is junk

I'm not quite sure what you're trying to say here.

POTS/EDS/MCAS are not real illnesses? I doubt you're meaning that, so I'm confused...

 

[Jonathan Edwards]

I'm not quite sure what you're trying to say here.

POTS/EDS/MCAS are not real illnesses? I doubt you're meaning that, so I'm confused...

POTS, EDS and MCAS are variously used to describe the clinical problems of people with real illnesses but I am not convinced that any of them are 'real illnesses' in the sense of being watertight categories. POTS is used both to describe a physiological measurement and a 'syndrome' that seems pretty indistinguishable form ME. EDS is probably best restricted to the very rare genetic syndromes that as far as I know have nothing to do with POTS or MCAS. I am not yet convinced that MCAS is a real category. It is used to describe a range of symptoms that might be mast cell mediated but in most cases I suspect are not.

The talk of overlap of these conditions is as far as i can see just a confusion - because all of them include the same symptoms as part of the 'syndrome'. Most of that talk comes from private physicians and a few university based physicians who by and large do not publish anything that helps us work out what they mean.

Basically I have good reason to think that a lot of this is bullshit and not much evidence to suggest these terms are of use to anyone. The one thing that is likely to be relevant to ME is POT (without the S), which may or may not be a feature of ME.

 

[Jonathan Edwards]

I was amused to see Kangasue's comments on another site about this discussion.

90% of academic physicians would probably say POTS is a dubious concept. I suspect it's 95% for MCAS. EDS is of course a recognised category but unlikely to have anythingg to do with the others or ME.