ME/CFS and POTS... are they one in the same?

[Nord Wolf]

This seems to be an old thread of many years. I’m wondering if anyone has any new information/clarification on this subject, because there seems to be so much confusion and or contradictory information on this subject… at least in what I’ve located thus far, and been told by the oh so “wise” healthcare “profession”.

PoTS and ME - are they the same thing, in that PoTS is the severest form of ME? I know that ME and CFS are proven to be two different conditions, and I agree with that. But where does PoTS fit in? I realize it all fits in to the tag of dysautonomia, but in various forms of dysautonomia there seem to be clear defining protocols for diagnosis and labeling. Parkinson's disease, multiple system atrophy, dementia with Lewy bodies, Ehlers-Danlos syndromes, autoimmune autonomic ganglionopathy and autonomic neuropathy, HIV/AIDS, autonomic failure, and postural orthostatic tachycardia syndrome all appear to be under the dysautonomia tag. But clearly PD is different than MSA, for example.

For me I was diagnosed with dysautonomia. Then came testing and the diagnosis of Myalgic Encephalomyelitis, then a separate diagnosis of CFS. I have quite a few other diagnosed conditions as well, but I’l keep the focus on ME, PoTS and dysautonomia.

On average my resting prone BP hovers around 112-72 with a resting HTR of 60 bpm. As soon as I stand up my HTR jumps to between 110 and 130 bpm. My BP shoots up to between 139-84 to 200-97. Of course dizziness, lightheadedness, slight nausea, some swelling of certain lower body parts, coldness and decreased feeling in the hands, instant cognitive decline, lung and nasal inflammation, spasmodic coughing, etc, all come into play upon standing from having been prone.

All of that is my normal from being prone to standing. It all decreases when laying back down again.

I’ve done the 10 minute prone while logging BP and HTR each minute, to standing for 10 minutes while logging the same. BP and HTR increase for the entire time standing, along with symptoms listed above.

My healthcare team is obviously thinking PoTS of one of the 3 forms, or something similar. I speak with my neurologist in a couple weeks.

Does anyone have a clear answer as to PoTS being an extreme of ME, or something completely on its own? Reading through this thread of old seems like there isn’t a very clear answer, at least in 2013.

My basic 10 minute test results:

 

[Atlas]

From what I understand,

POTS can be secondary to other conditions. In the case of people with both ME and POTS, POTS is often secondary to (caused by) the ME. That's certainly true for me. My POTS only developed — at least, only became noticeable — when I relapsed from mild to severe ME.

But it's also possible to have primary POTS, that is "idiopathic" POTS without any associated condition. In that case, there certainly is still an underlying cause, but it is not necessarily known or defined.

However there may not be consensus among experts yet on how to classify it.

See section "POTS classifications" in this article.


So, basically it's a syndrome (a collection of symptoms) and a kind of dysautonomia, which can be caused by different diseases, but the underlying disease is not always known.

 

[SNT Gatchaman]

Does anyone have a clear answer as to PoTS being an extreme of ME, or something completely on its own?

I rather view that ME/CFS is an extreme form of POTS. I.e. people can have POTS, with orthostatic intolerance that may be associated with a degree of exertion intolerance (possibly none) but not PEM. 90% of ME patients have orthostatic intolerance, with reduced cerebral blood flow, but not necessarily tachycardia.

I suspect that POTS is more the sort of diagnosis you get from a cardiologist who is seeing you for tachycardia. There are sex differences with cardiovascular compensations to gravity (see NASA astronaut studies): females tend to increase heart rate, males vasomotor tone. When I saw my cardiologist initially he chuckled (as a good-natured colleague) that I wasn't the typical demographic he sees with this, of a young, female, healthcare worker.

I know that ME and CFS are proven to be two different conditions

Strong disagree. The terms are diagnostic and political constructs. If it were proven that they were different, it would mean we understand the underlying pathology/ies and we don't.

Throughout medicine there have been diseases and symptom complexes defined by different specialties. Later it's been realised that this is a spectrum and the disease is the same thing. It may then get a new name that more accurately reflects the understood pathology.

"ME" was defined in 1955 with the UK's Royal Free Hospital outbreak. The US Incline Village outbreak was labelled as "CFS" by the CDC in the 80s. This was principally because it was thought there was no evidence of brain/spine inflammation and they promoted fatigue and down-played the neuroinflammatory (and orthostatic intolerance) symptoms. It also allowed for psychologisation of the condition. Fast forward to the 2020s and we're now getting evidence that neuoinflammation / microglial activation is a demonstrable feature.

This is similar to how long Covid has its own name, because it was defined by the newly suffering patients who didn't know about ME/CFS. Eventually it may get subsumed into the ME/CFS label.

 

[Nord Wolf]

Strong disagree. The terms are diagnostic and political constructs. If it were proven that they were different, it would mean we understand the underlying pathology/ies and we don't.

Appreciate your feedback and view. My comment here was based on a couple things:
1- the views and information both of my neurologists
2- the information liked in a thread from @Bronc :
https://forums.phoenixrising.me/thr...-chronic-fatigue-syndrome.88428/#post-2416268
And the research by Dr. Kiran Thapaliya described therein. Again, nothing absolute, but interesting enough for me to entertain and pay attention to continued research.

I rather view that ME/CFS is an extreme form of POTS.

Yes it appears there is still not a concrete answer here. Many follow your point of view, and then there are many who follow the view linked by @Atlas .

 

[gregh286]

I rather view that ME/CFS is an extreme form of POTS. I.e. people can have POTS, with orthostatic intolerance that may be associated with a degree of exertion intolerance (possibly none) but not PEM. 90% of ME patients have orthostatic intolerance, with reduced cerebral blood flow, but not necessarily tachycardia.



I suspect that POTS is more the sort of diagnosis you get from a cardiologist who is seeing you for tachycardia. There are sex differences with cardiovascular compensations to gravity (see NASA astronaut studies): females tend to increase heart rate, males vasomotor tone. When I saw my cardiologist initially he chuckled (as a good-natured colleague) that I wasn't the typical demographic he sees with this, of a young, female, healthcare worker.







Strong disagree. The terms are diagnostic and political constructs. If it were proven that they were different, it would mean we understand the underlying pathology/ies and we don't.



Throughout medicine there have been diseases and symptom complexes defined by different specialties. Later it's been realised that this is a spectrum and the disease is the same thing. It may then get a new name that more accurately reflects the understood pathology.



"ME" was defined in 1955 with the UK's Royal Free Hospital outbreak. The US Incline Village outbreak was labelled as "CFS" by the CDC in the 80s. This was principally because it was thought there was no evidence of brain/spine inflammation and they promoted fatigue and down-played the neuroinflammatory (and orthostatic intolerance) symptoms. It also allowed for psychologisation of the condition. Fast forward to the 2020s and we're now getting evidence that neuoinflammation / microglial activation is a demonstrable feature.



This is similar to how long Covid has its own name, because it was defined by the newly suffering patients who didn't know about ME/CFS. Eventually it may get subsumed into the ME/CFS label.

Pots and me are so closely connected even by illness severity etc..
Blood vessel issues or leaking capillaries or something to that effect.
Same as those long covid severest. Can't stand and bad pots.

 

[Rufous McKinney]

Does anyone have a clear answer as to PoTS being an extreme of ME, or something completely on its own? Reading through this thread of old seems like there isn’t a very clear answer, at least in 2013.

Systrom's latest talk (?) included a graphic with data from samples. I can't read much right now.

Thats shows ME, POTS and SFN as overlapping in some percentage of individuals.

Where is that graph?

( I tried to go forth and find this thing I saw about three days ago, but not cooperating)

 

[Rufous McKinney]

I rather view that ME/CFS is an extreme form of POTS.

I experienced INTENSE POTS during a period of several months. Extreme tachycardia. Extremely intense.

I consider it a symptom of when the ME gets more extreme, POTS got far worse.

I do not understand my "normal ME state" however- I do not have typical POTS symptoms yet want to collapse on the ground, quite often. Standing still briefly causes a form of panic to ensue. Either sit or move. But do not just stand here.

It arose during either continuous PEM or whatever you call not EVER recovering from arriving on a plane.

As I had to move more, and be around others and speak words; my lymphatics improved from more movement and I got FAR FAR worse POTS and extreme all the other ME crap.