Paradigm shift to disequilibrium in the genesis of orthostatic intolerance in patients with chronic fatigue syndrome (2019) Miwa

This is the Abstract for this article

Abstract
Background
Chronic fatigue syndrome (CFS) characterized by severe disabling fatigue and prolonging post-exertional malaise. The dysfunction of the central nervous system associated with myalgic encephalomyelitis (ME) has been postulated as the main cause of CFS. Orthostatic intolerance (OI) causes a marked reduction in the activities of daily living and impairs the quality of life in patients with ME/CFS. OI has been surmised to be a cardiovascular symptom with cerebral hypo-perfusion and exaggerated sympathetic nervous activation.

Purpose
Postural instability or disequilibrium may be involved in the etiology of OI because postural stability is an essential element for static balance.

Methods
The study comprised 72 patients with ME/CFS (18 men and 54 women; mean age, 37±10 years), who underwent neurological examinations and the active 10-min standing test.

Results
Disequilibrium defined as instability on standing with their feet together and eyes shut, was detected in 23 (32%) patients while postural orthostatic tachycardia in 16 (22%). Compared with 49 patients without disequilibrium, patients with disequilibrium more prevalently failed to complete the 10-min standing test (74% vs. 4%, p<0.01) and body sway was significantly more prevalently observed during the test (100% vs. 12%, p<0.01). The performance status score was significantly higher in patients with disequilibrium than those without it (median: 7 vs. 5, p<0.01), suggesting more severely restricted activity of daily living in the former. The prevalence of postural orthostatic tachycardia during the standing test was comparable between the patients with disequilibrium (23%) and those without it (22%, p=1.00). The 19 (26%) patients who failed to complete the 10-min standing test had disequilibrium more prevalently than those who completed it (89% vs. 11%, p<0.01). Performance status score was significantly higher in patients who failed to complete it than those who completed it (median: 6 vs. 5, p<0.01), suggesting more severe restriction of activity of daily living in the former. Significantly higher rates of disequilibrium (89% vs. 11%, p<0.01), unstable standing on one leg (84% vs. 17%, p<0.01) as well as abnormal tandem gait (79% vs. 11%, p<0.01) were noted in patients who failed to complete it than those who completed it. Body sway during the standing test was significantly more prevalently observed in the patients who failed to complete it than those who completed it (89% vs. 23%, p<0.01). The prevalence of postural orthostatic tachycardia during the standing test was comparable between the patients who failed to complete it and those who completed it (21% vs. 23%, p=1.00). Among the patients who failed to complete it 8 had the previous study records which revealed that 6 of them had completed it 6–24 months before when all the 6 patients had had no disequilibrium.

Conclusion
Disequilibrium should be recognized as an important cause of OI in patients with ME/CFS.
 
This is a conference presentation rather than an article - which is why there is just an abstract and the spelling and grammar are dodgy.

This seems a reasonable idea - we have discussed it here before - but the data presented do not seem to tell us much other than some people with ME are wobbly if they stand for a time.
 
I tried to boil this down. I hope I got it right.
  • POTS did not seem to predict whether a patient had disequilibrium.
  • Disequilibrium (and signs which seem related to disequilibrium) were much more prevalent among patients who failed the 10 minute active standing test.
  • Six patients who had previously passed the test failed it after developing disequilibrium.
The first point is probably the most interesting. The others seem to be what you'd expect.

I guess my question would be if there are other forms of OI, or other impairments of blood flow unrelated to OI, that might be causing disequilibrium.
 
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When i am sicker and just standing, i feel my quads filling with lactic acid. This just happened. I am not dizzy, i am stable on my feet, i simply feel the strong urge to lay down and if i don’t the symptoms will escalate, and in this recent example, my heart rate increased and i was slightly short of breath. This all got better upon returning to horizontal.

in my n=1 experience, disequilibrium and OI are different symptoms. I got OI and POTS early in my illness. My Romberg tests were negative. it was only 2 years ago that i had positive Rombergs.

OI in my view is not disequilibrium. People may have one or the other, or both.

Lastly continuing on my n=1 experience, One astute doctor found eye movement abnormality which qualified for a neuro-ophtalmologist consultation, and after MRI it was found i have a cyst on my cerebellum which would explain i get brief moments of dizziness when i bend forward just a bit. I was Explained by the specialist that this happens because there is a shift in CSF around that cyst which will cause that dizziness. It is a benign cyst and we are simply watching, it had not grown in a 6 month interval.
 
I have the suspicion that some symptoms associated with upright posture are being neglected.

We focus on measurable things like heart rate and blood pressure that have a relatively clear trigger, but I think that I've had subtle orthostatic intolerance for a long time, possibly since illness onset, and that it didn't initially involve heart rate or blood pressure.

I get a gradually increasing, vague feeling of feeling unwell that makes activities unpleasant. There are also has some mental effects, there is a decrease in speed, interest, awareness and ability to pay attention and participate.

I think that sitting mitigates but doesn't entirely prevent this, and that the onset is gradual and therefore not easily recognized as having to do with orthostatic intolerance.

It's possible I'm wrong but now that I have more well defined orthostatic intolerance I think I can make more sense of my symptoms.

Back when my illness started, this contributed to problems with school attendance and performance. Sitting still for hours becomes unpleasant and draining. Rather than assessing children with school difficulties for psychosocial problems, I think we should check whether they have orthostatic intolerance.
 
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I think it's possible that new PWME don't realise they have OI because of the emphasis on HR/ BP. I've never had HR/BP changes but OI was my first symptom.
Surely the questions a doctor needs to ask ( if we can get them trained!!) are "Do you NEED to lie down to reduce symptoms? Can you think better lying down?"

My mum has had persistent fatigue ( vasculitis) for 20 years and has never had to lie down to reduce it. Giving this example to try to illustrate that it's not the fatigue forcing us to lie down.
 
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Surely the questions a doctor needs to ask ( if we can get them trained!!) are "Do you NEED to lie down to reduce symptoms? Can you think better lying down?"

I think that is absolutely right if the question is about orthostatic intolerance. Orthostatic intolerance simply means difficulty maintaining a standing up position and may have 100 causes. It is not a specific cardiovascular diagnosis.
 
I'd agree that doctors rarely take the big picture view of orthostatic intolerance as "I feel better lying down". If they don't see any heart rate or blood pressure changes they're typically not interested.

For years I've noticed that I can be lying down with a very active mind, composing emails in my head. By the time I get to the computer and start typing my mind has gone blank.

I also believe that slow onset ME/CFS cohort is particularly good at compensating for symptoms, largely at a subconscious level because of that "vague feeling of unwell" that strategist mentioned. The behaviours I had before I had a clue about an ME/CFS diagnosis included:

Not wanting to stand in a lineup.
Having a two hour limit for house parties.
Getting home from work and insisting on spending an hour suntanning completely prone on the deck.
Always pulling up a chair to talk to students in the computer lab, or even sitting on the floor if no chair was available.
Avoiding the slow shopping amble.
Watching TV prone on the couch.
Continually popping up to put away a cup, take a plate to kitchen, etc way of using minimal exercise to disperse the unwell feeling.

I keep reminding people that sitting up is a physical activity, let alone standing.

When I look back I'm amazed at how many of my behaviours seem tied to a subtle long term illness.
 
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