Are there any evidence-based guidelines on pacing upright activity for orthostatic intolerance?

On another thread, the Bateman Horne guidelines for pacing upright activity were posted but @Jonathan Edwards said:

Which begs the question: Are there any evidence-based guidelines? And if there aren't, are there any guidelines (apart from the Bateman-Horne ones) being put forward on the basis of clinical experience or biological plausibility?

 

I am not aware of any official guidelines. There isn't any reliable evidence about what is the best thing to do in the long term so there shouldn't be any guidelines.

I think I mentioned in my Qeios article that some serious research into the effects of posture would be worthwhile.

Perhaps the key point to make here is that this may be a situation where this is not 'pacing' in any sense similar to that for exertion. That wording by Bateman Horne looks to me meddlesome. The best long term policy for dealing with OI may bear no relation to activity pacing.

 

Summary by Peter Rowe:
https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

https://www.dysautonomiainternational.org/

https://www.potsuk.org/managingpots/

(Edited spelling.)

 

I am pretty sure all that stuff is just made up.
I don't believe any of it has been tested for validity. It is exactly what someone would make up if they thought they knew what was going on and how to deal with it.
But nobody does.

 

Well, Sasha asked if there are guidelines that are put forward on the basis of clinical experience, so I hope this helps her in her search for information.

 

Yes, it does, Mango, and so does the discussion. I think it shows that we have guidelines, but based more on clinical experience or theory than on harder evidence. We're used to being in that position, I think! But it's a disappointing one to be in after decades of experiencing the problem.

 

I actually doubt very much that these guidelines are based on clinical experience. Early on in my career I found myself parroting and even making up stuff that doctors imagined ought to be true because it seemed to make sene to them but was based on no actual evidence from experience. Rowe's guidelines look just like that. All sorts of advice that I see no way could have been based on experience. The sad fact is that even 'biomedical' doctors make stuff up all the time.

And of course the CBT and GET people insist that their advice is based on clinical experience - including a professor of rehabilitation and a president of a royal college, but the data show that they could not possibly deduce anything from experience. They just remembered the patients who said they were better thank you (to get out of the door).

 

I can’t remember where but some s4me member mentioned on another thread that “Dysautonomia International” had some major issues related to ME. Does anyone know if there is a more in depth thread or similar on this?

 

He's been working with ME and POTS/OI patients since 1996. I imagine it would be very difficult to do without gaining at least some amount of clinical experience. Not to mention the research he has done over the years. He has also been invited and participated in POTS state of the science and clinical care expert consensus meetings arranged by the NIH. I imagine it would be difficult to avoid learning things about these conditions, while doing all those things for so many years.

 

This is the first time I hear of this. Was this possibly related to the Fedorowski paper that cited PACE to recommend GET in LC patients and which was reviewed by people at Dysautonomia international? I don't know if there are major issues, but they seem to have always prioritised POTS over PEM and sometimes in the past might have been rather dismissive of PEM, which given their interests might be quite normal.

 

I trained with the UK equivalent of Rowe and learnt a lot about how not to learn in medicine.
It is not at all difficult for doctors to fail to learn for forty years. We only have to look at the BPS people. And remember that although Rowe produced the first paper on EDS and fatigue it was Knoop who picked it up and made it a meme.

The simple point is that you cannot 'learn from clinical experience' unless you make controlled observations and in clinical practice you don't do that most of the time.

I am not sure what 'state of the art science' would be for an idea of a disease which looks to be based on very shaky premises. And the NIH don't come up smelling of roses in this it seems.

 

Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 National Institutes of Health Expert Consensus Meeting Part 1
https://www.autonomicneuroscience.com/article/S1566-0702(21)00058-8/fulltext

Part 2
https://www.autonomicneuroscience.com/article/S1566-0702(21)00066-7/fulltext

 

I find it hard to take seriously a document that comes out with

"
A variety of other clinical diagnoses may coexist with POTS, but it is largely unclear whether the presence of one of these other diagnoses defines a unique pathophysiological subset of POTS. Patients with POTS may simultaneously meet the diagnostic criteria for migraine, hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS) or chronic fatigue syndrome (CFS). The estimated frequencies of these clinical associations vary, and careful systematic assessments to identify these other disorders have not been done in a large POTS population. "

In other words 'we don't actually have any data but here are the popular myths'. At least it repeatedly admits that there aren't actually any facts on which to base any recommendations.

 

I'll be blunt now. It seems like you are making a lot of assumptions without actually knowing or even bothering to try and look things up. A quick Google search will show you that Rowe has published research articles on this since 1995 (maybe even longer?), so it's simply not true to suggest that he never makes controlled observations. I think you are being unfairly dismissive and judgmental about him and his work, and the actual impact it has had on the POTS/dysautonomia field and pwPOTS/dysautonomia over the years.

At least these people seem to be genuinely trying to help and learn more, through research and roundtable meetings and more. To me, that's worth something. It's not enough, but it's a start.

Do remember that POTS and dysautonomia as labels can be meaningful also in other than evidence-based ways, to many of us. For example, using the labels to find others suffering from the same symptoms has been very helpful for me, and has allowed me to learn so much from other people's experiences and the advice they have gotten from the specialists they have seen over the years. I've learnt a lot that has actually helped me in very practical ways, had an actual impact on my life and my functional ability.

Just like ME, POTS and other kinds of dysautonomia might not be perfect labels or well-defined diseases, but it's very apparent when you talk to others suffering from POTS and other kinds of dysautonomia that it isn't a random heap of myths and made-up stuff. Just like a pwME can recognize another pwME, the same is equally true for pwDysautonomia.

We definitely need more research, urgently. But in the meantime we're all just literally trying to survive, to get through one day at a time, sometimes even one moment at a time. And from this perspective every little bit helps, even imperfect offerings such as those from Rowe and others.

Just because you @Jonathan Edwards don't see the value in this doesn't mean that it's worthless nonsense.

(Edited spelling.)

 

I understand your sentiments @mango but I am in a bind here. @Hutan kept chastising me for not pointing out that 'FND' is a bogus concept that can only do people harm to believe in. I actually agreed with that in terms of the way Stone and Carson use it but I thought it might be useful for people to hang on to in its meaningful sense. Maybe I was wrong. But I see POTS as just the same. We have to have a level playing field. Maybe I am wrong the other way around this time but I am not sure that I can be charged with being wrong both ways around!

 

And I guess I should say that I base my viewpoint on knowing these people very well personally, to the extent that I was asked to take over the main UK clinic when the relevant person retired. My working life was steeped in this stuff.

 

When you say "these people", are you referring to Peter Rowe?

 

My personal knowing refers to the UK equivalent, who has sat on just as many eminent committees and written just as many papers - and regularly he would tell me about some new discovery about dysautonomia or POTS by friends like Peter Rowe. I was otherwise meaning knowing in the sense of having seen groups of them all singing to the same hymn sheet. I have not met Rowe personally but I have read what he writes. It seems to me that he says things without due evidence and that is all I need to know.

 

Speaking as someone who has had so-called POTS for 20+ years, it’s important to be cautious with the medical advice out there given out by patient orgs and celebrity doctors. I’m not going to name the org but about 10 years ago they admitted on their Facebook page that a study found no effect of IV saline on POTS symptoms. I don’t think this was ever published, simply buried with a shrug of the shoulders and comments along the lines of “many patients have found infusions beneficial in the real world”. It was the same more recently when a double-blind trial found no effect of IVIG on POTS yet the orgs just shrugged it off and continue to promote it as a treatment. The Celltrend antibodies are also accepted as fact in those circles despite not being real.

I guess what I’m trying to say is that there is a lot of pseudoscience in dysautonomia circles and it’s all coming from a handful of doctors, probably 5-10 people at most. It’s aimed at people who have ME/CFS with orthostatic symptoms who for whatever reason choose to use other labels for their condition like POTS, MCAS, EDS etc.