Trial Report Plasma exchange therapy for the post COVID-19 condition: a phase II, double-blind, placebo-controlled, randomized trial, 2025, España-Cueto+

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

 

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.

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.

 

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

 

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

 

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".

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.

 

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

 

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.

 

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

 

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.