Deconditioning does not explain orthostatic intolerance in ME/CFS (van Campen, Rowe, and Visser, 2021)

Pyrrhus

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Deconditioning does not explain orthostatic intolerance in ME/CFS (van Campen, Rowe, and Visser, 2021)
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02819-0

Excerpt:
van Campen et al 2021 said:
Background
Orthostatic intolerance (OI) is a frequent finding in individuals with myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Published studies have proposed that deconditioning is an important pathophysiological mechanism in various forms of OI, including postural orthostatic tachycardia syndrome (POTS), however conflicting opinions exist. Deconditioning can be classified objectively using the predicted peak oxygen consumption (VO2) values from cardiopulmonary exercise testing (CPET). Therefore, if deconditioning is an important contributor to OI symptomatology, one would expect a relation between the degree of reduction in peak VO2during CPET and the degree of reduction in CBF during head-up tilt testing (HUT).

Methods and results
In 22 healthy controls and 199 ME/CFS patients were included. Deconditioning was classified by the CPET response as follows: %peak VO2 ≥ 85% = no deconditioning, %peak VO2 65–85% = mild deconditioning, and %peak VO2 < 65% = severe deconditioning. HC had higher oxygen consumption at the ventilatory threshold and at peak exercise as compared to ME/CFS patients (p ranging between 0.001 and < 0.0001). Although ME/CFS patients had significantly greater CBF reduction than HC (p < 0.0001), there were no differences in CBF reduction among ME/CFS patients with no, mild, or severe deconditioning. We classified the hemodynamic response to HUT into three categories: those with a normal heart rate and blood pressure response, postural orthostatic tachycardia syndrome, or orthostatic hypotension. No difference in the degree of CBF reduction was shown in those three groups.

Conclusion
This study shows that in ME/CFS patients orthostatic intolerance is not caused by deconditioning as defined on cardiopulmonary exercise testing. An abnormal high decline in cerebral blood flow during orthostatic stress was present in all ME/CFS patients regardless of their %peak VO2 results on cardiopulmonary exercise testing.
I thought the title statement should have been obvious to people by now, but apparently not.
Apparently some people think that POTS can be treated with exercise.
 
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I thought the title statement should have been obvious to people by now, but apparently not.
Apparently some people think that POTS can be treated with exercise.
These studies, however obvious they may seem, help to set the record in the literature. It's valuable to have common knowledge tested and quantified in papers like this.

My POTS developed when I was in good physical shape, so I know first hand that deconditioning is not the cause of my POTS. I will say that letting myself become deconditioned will worsen the POTS, however. A steady exercise routine, however mild, does provide tangible improvements.
 

sb4

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Apparently some people think that POTS can be treated with exercise.
My POTS developed when I was in good physical shape, so I know first hand that deconditioning is not the cause of my POTS.
I have been visiting a specialist clinic in London for my POTS for the last 4 years and the only treatment I have recieved is advice to exercise despite it not having an effect on my condition.

Like you I was in good shape when these symptoms started and continued to exercise for a year before the symptoms where too much and I had to stop. I would bring this up and more at every single appointment but all that would happen is I would be treated like a troublesome patient whos beliefs about exercise are getting in the way of recovery.

So yes doctors do think POTS is caused by deconditioning. I imagine in some people exercise really helps their symptoms but in others the effect is minimal or even detrimental.
 

sb4

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@sb4 can the clinic prescribe drugs? Patients on dinet.org seem to be prescribed quite a lot of medication.
They tested my BP to see if I could take one drug but my BP wasnt low enough.

I am aware that there are many other drugs that can be trialed for POTS but it appears this clinic is super conservative. I am hopefully getting transfered to a clinic that is more willing to prescribe off label meds.
 

livinglighter

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They tested my BP to see if I could take one drug but my BP wasnt low enough.

I am aware that there are many other drugs that can be trialed for POTS but it appears this clinic is super conservative. I am hopefully getting transfered to a clinic that is more willing to prescribe off label meds.
It’s the first time I have been made aware that exercise may be the only thing prescribed for POTS. But it is reassuring that the clinic puts patient safety at the forefront of its treatments. I hope the transfer works out for you.
 

lenora

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I have been visiting a specialist clinic in London for my POTS for the last 4 years and the only treatment I have recieved is advice to exercise despite it not having an effect on my condition.

Like you I was in good shape when these symptoms started and continued to exercise for a year before the symptoms where too much and I had to stop. I would bring this up and more at every single appointment but all that would happen is I would be treated like a troublesome patient whos beliefs about exercise are getting in the way of recovery.

So yes doctors do think POTS is caused by deconditioning. I imagine in some people exercise really helps their symptoms but in others the effect is minimal or even detrimental.

@sb4.....Hello. I'm in a quandary myself about exercising and our problems. Since I'm 74, and have had a lot of hospitalizations and surgeries, I find that my physical abilities have lessened. I do feel it's in our best interest to do very light exercise just so we can keep moving, but hard exercise is not something we can do, unless we recover. Then I wonder how much it's responsible for a relapse?

Presently my goal is to just keep into walking into the kitchen, the bedroom, sitting in a chair, not using a wheelchair and being able to bathe myself and wash my hair. If I can do all of that, I'm just happy. Some things simply never go away, there is always pain and those "not great" days that are common.

In the beginning, and after major surgery, I was told to resume walking 3 miles/day. I swear that it just about killed me. I would get out of bed, and out the door and hope I'd make it home again. Not smart in the least, and I soon stopped that recommendation. PT is also tough, unless it's a special one that incorporates myofascial therapy. Everything can be made worse....even massage is often too much for me.

Yet my experience has shown me that we do have to do very light exercise in order to remain mobile. Anyone
else with their thoughts? Yours, Lenora.
 
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@lenora Yeah I think doing light exercise within your limits is wise as exercise is mostly beneficial. I should do more myself. Find myself sitting down all day most days.
I agree that at least for some of us older ones....light exercise and just trying to do small things with some body awareness is helpful. Trying to stretch and stay limber (I'm still a bit flexible, oh THAT hEDS).

For me, cleaning something is exercising. Everything here needs cleanign, its far beyond any capacity i have at any given moment, to scrub up: this many windows, surfaces, shower, tub kitchen floors carpets dusting

Oddly I have fewer sort of body grievances that in the past bothered me- like back aches, or weird joint things. I seem to have way less of that- but my joints are very weak due to collagen- if I push it at all: well now we sure notice.

I too mostly hang out in my very comfortable chair. I"m not laying down that much. I try to get up out of the chair, the push against gravity...watch legs crossed and foot going to sleep!
 

Judee

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ME/CFS patients had significantly greater CBF reduction than HC
Kinda maybe off topic but I wonder what causes this. Could it be "leaky brain?" They say that leaky brain lets toxins, etc across the blood brain barrier but could our "leaky brain" be helping the blood drain away from our brains as well?

https://mindd.org/leaky-brain/

That website says that GABA is used to test for leaky brain. One doctor I've read about said if you get a reaction to supplemental GABA it indicates "leaky brain." I get a very, very strange reaction to GABA and I often get a swollen brain and brain stem feeling.
 
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looked at all that: Saved the What To Do About it Mega list.

could our "leaky brain" be helping the blood drain away from our brains as well?
Thats probably not whats going on.

So ME folks literally own most of everything described there under Leaking Brains. It corresponds to our leaking guts. Somebody should inform the people who put that together: that we exist.