Review JAMA - Postural Orthostatic Tachycardia Syndrome (POTS) A Review - Chung, Raj, 2026

[Jonathan Edwards]

From my previous discussions on the forum with people who do not regard POTS as a syndrome, the main argument has been, “I don’t believe it.” Interestingly, nobody made that argument about ME/CFS before the publication of GWAS findings.

Except that a majority of doctors don't believe in ME/CFS. They would n't be bothered to come here much so we wouldn't herar them, although we have had one or two doubters here selling miind-brain treatments. And on Reddit you have bevvies of them.

And of course I have been making the same argument in relation to "ME" for years now.

 

[Jonathan Edwards]

There is a group of patients with OI, palpitations, exercise intolerance, breathlessness, muscle aches and weakness, sleep problems, and other symptoms, but without “classic” PEM. This is based on my observations within my local patient community and on my reading of the POTS subreddit.

But this is precisely the artefactual selection process I was talking about. A subreddit for people with POTS will collect those people who have those symptoms, just like a 'POTS clinic' does.

I am personally not that impressed by 'classic PEM' being important in terms of diagnostic label. I know it is very popular with advocacy groups but what i get from listening to hundreds of people with ME/CFS is that it is not necessarily useful to put it central. It suffers from being a causal interpretation, too.

To me it is the long-term disabling cluster of symptoms with fluctuation that is not explained by any obvious understood metabolic or immune dynamic that makes the syndrome worthy of a name.

 

[Jonathan Edwards]

It seems plausible to me that there can be a full house situation that we call ME/CFS, but maybe you can have other components in relative isolation. This could be eg POTS/OI, possibly quite disabling by itself, even without PEM etc. It could be fibromyalgia without eg OI or PEM. This might all be genetically determined.

That would be my thought too. POT is clearly related to the ME/CFS cluster, and so is widespread pain/FM. Fibromyalgia is interesting in that it really just means a lot of pain, so causes less of a problem as there is less of a claim that it is responsible for all the other things too. What makes 'POTS' problematic is the claim that it somehow explains all the ME/CFS symptoms.

 

[Jonathan Edwards]

I think another helpful distinction point between ME/CFS and POTS is if graded exercise therapy works at not only getting you better but also not deteriorating you. It seems to be quite universal that GET worsens people with ME/CFS, but I've read people with POTS share that GET helped them get a handle on their symptoms. That seems to indicate distinct syndromes.

Again, I think you have to remember just how unreliable and unrepresentative posts on social media are likely to be when it comes to causal interpretations. We have people on social media insisting they were cured by the Lightning Process. If your definition of ME/CFS focuses on PEM then by definition GET will be unpleasant and so things become self-fulfilling.

I just cannot see POTS being just ME/CFS because it seems like there are so many more people with POTS than ME/CFS.

Is there any reason to think that. I thought that formally diagnosed POTS was pretty uncommon. I have been aware of the concepts of ME and CFS for decades. I have only very recently heard people talking about POTS here (and I have a social contact with the diagnosis). I never ever came across a discussion of POTS in my professional experience in a department of medicine.

The private physicians who make multiple diagnoses often throw around ideas of 'dysautonomia' and I guess now 'POTS' but my impression is that most of the time this is diagnosed by ESP rather than a tilt test.

 

[Jonathan Edwards]

I guess that my original point was that the paper posted includes not a shred of this sort of nuanced discussion but does include a string of poorly evidenced statements, especially in relation to treatment. It seems to pander to the desire by both physicians and patients to see medicine in terms of diagnostic label-pinning rather than understanding overlapping causal pathways and generating reliable practical clinical evidence.

 

[Montyjazu]

From my previous discussions on the forum with people who do not regard POTS as a syndrome, the main argument has been, “I don’t believe it.” Interestingly, nobody made that argument about ME/CFS before the publication of GWAS findings.

There is a group of patients with OI, palpitations, exercise intolerance, breathlessness, muscle aches and weakness, sleep problems, and other symptoms, but without “classic” PEM. This is based on my observations within my local patient community and on my reading of the POTS subreddit. And yes, no large GWAS of POTS have been carried out yet. However, not a single clinician on the forum has experience working with such patients. Meanwhile, treating off-label treatment options for POTS as a punching bag seems to be a popular activity here.

In my view, POTS is a grey area. I have no evidence to say whether it is a subtype of ME/CFS or a distinct syndrome. However, lack of PEM makes the latter plausible. In my view, understanding haemodynamic alterations is an important direction for research, regardless of whether POTS is a syndrome in its own right or a subtype of ME/CFS. I suspect that, if a project related to, say, blood volume or muscle perfusion during exertion were proposed through the WeAndME project, it would be rejected on the grounds that “I don’t believe it” or “It’s not related.”

I very much agree with this. Orthostatic issues run very strongly through my family. I am keen to better understand what is driving it. I suspect in my case that lower blood volume may contribute but is probably not the only factor. However, i have no direct way of testing this hypothesis. Even with a group like POTS, we have to be very careful as there are big differences even within this cohort. I show no visible blood pooling and possibly the reason why I don’t benefit from compression clothing. Others do benefit. My genetic and test data as well as symptoms are more consistent with a tendency to overconstrict if anything. It is highly unlikely that treatments to help vasoconstriction will help me, but might help others. Effectively, i am saying that i believe symptoms/signs matter and can provide important clues. These are too often ignored within the medical system that tends to prefer generic top level formulas to address medical conditions with often little interest or flexibility to adapt to individual differences. And yes i get that this is difficult. I also think this will impact scientific trial success until we can ensure we are testing the right people.

 

[Montyjazu]

Again, I think you have to remember just how unreliable and unrepresentative posts on social media are likely to be when it comes to causal interpretations. We have people on social media insisting they were cured by the Lightning Process. If your definition of ME/CFS focuses on PEM then by definition GET will be unpleasant and so things become self-fulfilling.



Is there any reason to think that. I thought that formally diagnosed POTS was pretty uncommon. I have been aware of the concepts of ME and CFS for decades. I have only very recently heard people talking about POTS here (and I have a social contact with the diagnosis). I never ever came across a discussion of POTS in my professional experience in a department of medicine.

The private physicians who make multiple diagnoses often throw around ideas of 'dysautonomia' and I guess now 'POTS' but my impression is that most of the time this is diagnosed by ESP rather than a tilt test.

I suspect people have experienced POTS over generations, but it is only more recently recognised as a symptom cluster, hence the increasing diagnosis. A bit like visual snow syndrome is a new diagnosis but not a new phenomenon. From my experience you don’t always realise that you have issues until you look back and accept it was not normal to sit down on the floor in shops/queues, constantly lean on things, sit cross legged in chairs and lie with your feet up on the back of the sofa. I could never understand why anyone could possibly want a sit-stand desk. I have an NHS diagnosis via tilt table (after a 3 yr wait), but that route has again closed to many with recent funding cuts across NHS services and many closing to new/all patients.

 

[Formerhuman]

This is an interesting point. I wonder, then, if the modern (more strict) definition of ME/CFS has lead to the rising diagnosis of other labels. Do you have a sense of if the people you're thinking of would fit under Fukuda for instance?

No, cos Fukuda criteria don't contain OI, racing heart, intolerance of physical exertion.

 

[Jonathan Edwards]

No, cos Fukuda criteria don't contain OI, racing heart, intolerance of physical exertion.

But that would not exclude people who had these.

 

[InitialConditions]

In my view, POTS is a grey area. I have no evidence to say whether it is a subtype of ME/CFS or a distinct syndrome. However, lack of PEM makes the latter plausible. In my view, understanding haemodynamic alterations is an important direction for research, regardless of whether POTS is a syndrome in its own right or a subtype of ME/CFS. I suspect that, if a project related to, say, blood volume or muscle perfusion during exertion were proposed through the WeAndME project, it would be rejected on the grounds that “I don’t believe it” or “It’s not related.”

Yes, we absolutely need more research on this, in both POTS and ME/CFS. We know some of the key mechanisms likely driving orthostatic intolerance, haemodynamic alterations and compensatory tachycardia, though we need more and better quality evidence. The hard part will be understanding their root cause(s).