Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gaglio … Jason, 2022

This is also my experience with vestibular viral dysfunction. I can feel my heart rate going up a little when I'm upright. It's exhausting. It requires more energy to balance myself, concentrate and talk at the same time. I lose focus easily.

I remember reading an article a while back that described vestibular dysfunction fatigue as PEM and that pacing helps prevent worsening. It's not PEM as described by pwME, but pacing certainly helps.

 

PEM is usually described as a crash - fatigue and inability to do things - with the symptoms part left out. Things like vestibular dysfunction can easily come on with PEM.

It can be easier to think of the process as overdoing things so your anaerobic threshold drops and lowers how much energy you can produce. This can lead to all sorts of problems as well as the usual type of crash.

Pacing is really just lowering what you do to keep within your energy budget.

 

I strongly disagree. My physically-induced PEM seemed to be due to t-cell activation from muscle damage (consistent 24 hr delay). My PEM did not affect my physical energy production/accessibility. Even my more severe PEM episodes wouldn't have reduced my body's ability to bike 40 km; the neurological symptoms simply made me not feel up to doing such activities. I consider reduced physical ability to be a downstream effect of ME's neurological dysfunctions, not an actual reduction in ATP production. There might be some measurable reduction due to changes in hormone production and various other neurologically-controlled physical and chemical aspects of the body, but I do not consider ME to be a loss of actual chemical energy.

Pacing didn't work for me, since my ME wasn't triggered by overall exertion; it was--as best I could figure out--triggered by damage to muscle cells by using them in ways that they weren't used to working. Biking and hiking were not triggers (unless well beyond my usual distances), but even a minute of using my muscles in unusual ways would trigger PEM 24 hrs later. Washing a window or a ceiling (arms up) would definitely trigger PEM, as did climbing a ladder. I expect it would have taken less than a minute of swordfighting lessons or a dancercise class to trigger PEM.

So no, PEM is not directly about energy overuse, and it isn't, AFAIK, a reduction in available ATP (there's no clear clinical evidence of that). For the more common form of ME, overexertion probably alters some chemical ratio, which alters something else, and so on, until it changes whatever mechanism is ME's core dysfunction. I believe that's neurological, or neuroimmunological. That affects function in various parts of the brain and nervous system, which possibly many steps later results in the feeling of a lack of energy and/or an inability to make those muscles work correctly.


Hmmm, do the severe ME patients show a reliable deficiency of ATP? If the reason they can't go for a run is that they are lacking in chemical energy, that should show up most strongly in those patients. My guess is that the differences between them and a healthy person would more likely show up on brain scans or nerve impulse measurements. Maybe it's the part of the brain that converts the 'I will now get up and go for a run' signal into nerve impulses. Maybe it's the nerves themselves. Maybe it also involves the feedback signals and processing. I think it would be easy for some small changes in just a few brain cells (hard to notice even with today's technology) to reduce a person's physical ability, but difficult for there to be a physical reason that hasn't been noticed.

I still think a valuable experiment would be to have the muscles of a PWME (typical type, not my weird type) activated by electrodes, and measure the physical output. Is it less than the healthy control? That experiment should answer the question of whether ME's symptoms are physical or neurological.

 

My cognitive problems don't disappear when lying down, but I have often joked that my IQ goes up 30-40 points when I'm lying down.

And my husband knows better than to ask me a question while I'm standing up. I always have to sit down first.

I guess I've never posted these kinds of comments here?

The point is that, for me, being upright definitely worsens my cognitive problems!

 

When I'm lying down I compose email responses in my head, often recomposing them until I get them right. As soon as I stand up and walk into the computer room the thoughts are gone. For years I would sit at the computer first and wonder why I had writers block.

 

Voice input? I have no idea what's available these days, but I'm guessing it's practical. You could lay there and compose your responses, and either have a monitor overhead, or have it read the text back for you.

Maybe there should be a thread for technology aids for people with severe ME. It's probably hard for them to research the potential options.

 

If they overlap to a great deal, wouldn't this support rather than challenge the IOM case definition?

 

The authors’ logic seems to be that, given that both symptoms significantly overlap, there is no reason to make either optional; they should both be compulsory symptoms.

 

I think none of the symptoms should be cumpulsory, since there will always be some individuals that have a quirk that avoids or overcomes some particular symptom. I managed to stop my PEM, but none of my other ME symptoms, so do I no longer qualify as a PWME?

 

I think there are a few parallels with PD. Perhaps it's partly the dopamine relationship, but autonomic issues are also clear and don't seem to be explained to patients well. There's lots of good info out there but seems to be presented to patient as - part of the disease and to drink more water . .

My Father in law has PD.
Over the past year autonomic function has declined across many areas- in the last 3 weeks it's simply crashed . There are similarities to my daughter's crashes ( but more extreme)

He has had issues with low BP - likely exacerbated by medications. At the start of the year he had to track BP three times a day. Apart from normal daily decline it was clear from the results table that BP dropped significantly more on days when he was more active in that he had been on his feet more.
Activity wasn't tracked which seems to be a big miss. His wife has good recall and could determine what had been done on what day to enable the correlation.

I have suggested compression socks , but because neither GP not consultant have suggested this it's not been followed up. Their generation is one which had complete reverence and belief in medicine.

Lying to sitting and Sitting to standing is now a big issue which combined with gait issues means he now needs constant assistance.

 

Yikes. Then I wouldn't be considered to have ME. Then what?

 

I didn't have orthostatic impairment until 11 years into the illness after a relapse Now it's a major part of my disability.

 

Full text is available here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9550273/pdf/em-11-1-em-2021-0033.pdf

 

I read it as saying that you shouldn't have the choice between brain fog OR OI as a symptom, as OI doesn't add much that brain fog doesn't cover. So you'd have brain fog as the required symptom. But that may just be me misreading it?

 

The way you read it has been Jason’s position in the past.