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[Jonathan Edwards]

I was considering POTS as a set of symptoms (as linked above) that occur as part of ME, LC and other illnesses. Not as something that is imperatively and solely linked to ME.

OK, but pretty much all of those symptoms, other than the fast heart rate, are features of ME/CFS anyway and the key one, orthostatic intolerance, looks likely to have nothing much to do with heart rate in ME/CFS in general. The doubt is whether this particular group of symptoms deserves another syndrome name on top of ME/CFS.

And in cases in which it is not, exercise does seem to be an efficacious therapy.

Is there good evidence for that? I have yet to see a decent study of exercise therapy treating anything much. Exercise makes you fit and staves off cardiovascular disease but there doesn't seem to be much evidence that it makes ill people better. If Fedorowski gets ME/CFS wrong maybe he gets this wrong too?

I am an academic physician. Fedorowski sounds to me like a man trying to justify his beliefs rather than a scientist.

 

[Utsikt]

I (as well as many others) as a previously young, fit and healthy person experience (and effectively treat with cardiovascular medication)

This is purely a personal anecdote: I have Postural Orthostatic Tachcardia, and I would score very high on the Malmö score. My HR reached 160 after standing for three minutes, without changes in BP. I’ve had a full clinical examination of my heart, and it’s perfectly healthy. I’m using 25 mg of Metoprolol Depot (prescribed by a cardiologist), which has lowerd my HR to a more normal range (120 standing) and it reduced palpatations. It has not done anything for the other ‘POTS symptoms’ like rapid onset of extreme muscle weakness, lightheadeness, etc.

According to my cardiologist, mine is a representative experience among his patients. Beta-blockers does not treat the disabling symptoms of POTS in his patients.

It is based on these observations, that one can challenge the usefulness of the concept of ‘POTS’. As Jonathan explained previously, the symptoms are real, but it’s doubtful if they are caused by Postural Orthostatic Tachycardia.

exercise does seem to be an efficacious therapy

Do you have any sources for this that we can look at? I’m assuming it would have to be studies of patients without PEM.

 

[rapidboson]

What I am meaning, and I think EndME is also saying is that although everyone is aware of a cluster of symptoms it is unclear that they have much to do with orthostatic tachycardia.

I think someone up thread made the point that lots of these syndromes are poorly defined - including hEDS, MCAS, POTS and maybe ME or ME/CFS. For me there is a crucial difference between the ME/CFS concept, which is purely a syndrome based on commonly associated features and the others which all invoke some sort of speculated causation or pathology. (ME is maybe like the others if you assume it implies inflammation.) We don't have good reason to think that chronic disabling symptoms of the sort seen in ME/CFS and indeed in many people given the diagnosis of 'POTS' have anything to do with collagen genes, mast cell abnormalities or indeed a tendency to tachycardia on standing.

Suggesting this is not 'wild'. Most of my medical colleagues would just raise their eyebrows and dismiss all of these categories as make believe. (The few 'experts' who champion these syndromes are very unimpressive in science terms.) My position is different, however. I am spending up to half of my waking day working on issues related to ME/CFS, gratis, because I think the illness desperately needs some serious thought. The people on this forum are amazing as a team to work within in that regard. Whether it is digging out papers or giving personal symptom accounts or criticising logic or whatever, the discussions here are, in my past experience, exactly what is needed to break a log jam in a biomedical problem. I think most people on the forum would see that the basis of the POTS concept is shaky. ME/CFS Skeptic has laid out the arguments very nicely in a blog.

Thanks for expanding on your previous comment, it made me understand your point much better

 

[Utsikt]

Nor have I said that anybody was doubting LC, I believe you have misunderstood my sentence (which is about POTS as a co-morbidity of LC), mate.

You’re right, apologies. I got confused by the parenthesis. My bad!

 

[rapidboson]

OK, but pretty much all of those symptoms, other than the fast heart rate, are features of ME/CFS anyway and the key one, orthostatic intolerance, looks likely to have nothing much to do with heart rate in ME/CFS in general. The doubt is whether this particular group of symptoms deserves another syndrome name on top of ME/CFS.

Is there good evidence for that? I have yet to see a decent study of exercise therapy treating anything much. Exercise makes you fit and staves off cardiovascular disease but there doesn't seem to be much evidence that it makes ill people better. If Fedorowski gets ME/CFS wrong maybe he gets this wrong too?

I see your point now, thank you.
Say you have a patient showing multiple symptoms of POTS but lacking PEM, for example. In this case, from my understanding, it wouldn't be correct to attribute their symptoms to ME/CFS, right? Hence, I do see merit in having a name for it.

Regarding the evidence (also to @Utsikt), I have not looked through the literature on this, this is purely clinical experience from my cardiologist working at the national hospital here. Hence me phrasing the sentence with "seems to be".

This is purely a personal anecdote: I have Postural Orthostatic Tachcardia, and I would score very high on the Malmö score. My HR reached 160 after standing for three minutes, without changes in BP. I’ve had a full clinical examination of my heart, and it’s perfectly healthy. I’m using 25 mg of Metoprolol Depot (prescribed by a cardiologist), which has lowerd my HR to a more normal range (120 standing) and it reduced palpatations. It has not done anything for the other ‘POTS symptoms’ like rapid onset of extreme muscle weakness, lightheadeness, etc.

I'm sorry that it hasn't helped with many of your symptoms.
I've been on propanolol 10 mg TID which has greatly helped me with this "tired but wired" feeling I had for several months. I am assuming this is due to its central and unselective effects? It has improved the tachycardia as well, from 150 to 120 bpm. Besides that, I'm also on midodrine and fludrocortisone. Since starting midodrine, I am able to be more active (I started this before the BB). Not sure fludrocortisone is doing much tbh.
I'm sure you've tried a bunch of different meds.
I guess this might be another anecdote for heterogeneity.

 

[Utsikt]

I'm sure you've tried a bunch of different meds.

Not really, there are no proven meds for ME/CFS.

 

[rapidboson]

Nope, but there are symptomatic treatments used in the clinic that can improve quality of life. But I suppose it's a personal choice to either wait for (potentially causal) treatments that have passed robust trials, or to try improving QoL in the meantime with therapeutics of lower quality evidence.
In particular, I was talking about POTS in my previous comment, not ME/CFS.

 

[Utsikt]

But I suppose it's a personal choice to either wait for (potentially causal) treatments that have passed robust trials, or to try improving QoL in the meantime with therapeutics of lower quality evidence.

I’m mostly concerned about the risks of unevidenced treatments.

 

[Jonathan Edwards]

Say you have a patient showing multiple symptoms of POTS but lacking PEM, for example. In this case, from my understanding, it wouldn't be correct to attribute their symptoms to ME/CFS, right? Hence, I do see merit in having a name for it.

I think it would all depend on what symptoms we are talking about. We are not going to have a name for every possible combination. I think it is reasonable to refer to POT (without the S) as a component of somebody's symptom pattern.

There are subtleties to this. A syndrome is not just a group of associated features. It is a group of features for which there is a reasonable case for proposing some common causal path component. The trouble is that biology, and in particular pathobiology, has all sorts of minor as well as major variations. I think PEM is the best 'key feature' to hang a syndrome of long term disabling symptoms aggravated by exertion on but I would not be surprised if there were people with broadly the same causal path without typical PEM.

You could certainly argue that POTS, with POT as the key feature is just as legitimate. However, my experience is that it is almost always presented by physicians wrapped up in some speculated mechanism of 'dysautonomia' that is supposed somehow to account for all the features. POT is seen as a 'diagnostic test' for this. But beyond POT the whole thing seems totally ill-decinfed because just about any symptom seems to be allowed in.